RESUMO
Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.
RESUMO
Purpose: Adults with cerebral palsy experience challenges related to lifelong disability, such as stress, fatigue, pain and emotional issues. E-health services can be delivered regardless of residence and level of functioning. The aim of this pilot study was to explore the potential benefits and feasibility of a mindfulness-based program delivered to adults with cerebral palsy via group video conferencing. Methods: Six adults with cerebral palsy received an 8 week mindfulness group-based program via video conferencing. A multiple single-case study design was applied, including quantitative and qualitative elements. Pain was assessed 16 times through the study period. Questionnaires were administered to gather data on pain catastrophizing, stress, fatigue, emotional distress, positive and negative affect, and quality of life. A focus group interview addressed experiences with the intervention and the mode of delivery. Results: The participants' pain levels showed varied trajectories. Pain catastrophizing and negative affect were statistically significant decreased. Qualitative data indicated benefits from mindfulness in coping and stress management. The video conferencing delivery was evaluated as feasible, with no major adverse effects. Conclusion: Since the pilot study had a small sample size, potential treatment benefits should be interpreted with caution. However, this pilot study provides important information in the planning of future larger and controlled studies on mindfulness-based interventions programs via video conferencing for adults with cerebral palsy and other persons living with long-term disability.
