Severe Childhood Autism: The Family Lived Experience.

This research examined the experiences of families living with a child with severe autism. There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and includes the voices of multiple family members. Van Manen's phenomenological approach was used for data collection and analysis. This approach allowed for the use of innovative data sources, including unstructured individual and family interviews, observations, and family lifelines (a pictorial, temporal picture with comments of the families lives). This study included 29 interviews with 22 participants from 11 families. All data were creatively triangulated and interpreted. Six essential themes were identified. First, families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges. Second, families described severe autism behaviors that often caused self-injury, harm to others and damaged homes. Third, profound communication deficits resulted in isolation between the family and child. Fourth, families discussed the unrelenting stress from lack of sleep, managing the child's developmental delays, coordinating and financing services, and concern for the child's future. Fifth, families described consequences of isolation from friends, school, the public, and health providers. Sixth, families portrayed their need for compassionate support and formed 'hybrid families' (nuclear, extended families and friends) to gain support. Study results can be utilized to educate nurses/other providers about the unique needs of families with children with severe autism and could influence health care policies to improve the care for families caring for children with severe autism.

Understanding spasticity from patients' perspectives over time.

AIM: The purpose of this paper was to report patients' understanding and perceptions of personal spasticity experiences over time. BACKGROUND: Spasticity is an unpleasant and poorly understood experience associated with upper motor neuron disease. DESIGN: An original qualitative study was conducted in 2008-2009. METHOD: Content analysis was used to extract meaning from the responses of 23 patients to semi-structured interviews during 7 days of acute rehabilitation for neurological diseases associated with spasticity. Findings. Patients used words reflecting muscle tone and spasms to describe spasticity. Themes reflecting the spasticity experience over time were Ambiguous Experiences, Navigating Symptom Experience, Wounded Self, and Unending Journey. CONCLUSION: Spasticity as experienced is complex, involving a wide range of unusual sensations sensitive to stressors in everyday life. Clinical evaluation of spasticity should include patient reports. Knowledge about patient word choice used to describe spasticity can enhance communication with healthcare providers.

Living life in the balance at midlife: lessons learned from mindfulness.

The purpose of this qualitative study was to describe the perceived effects of a Mindfulness-Based Stress Reduction (MBSR) Program on stress and quality of life of women in midlife. A total of 20 nurses, aged 45 to 55 years, who participated in a stress reduction course were contacted for interviews. A total of 9 nurses agreed to be interviewed. Content analysis was used to analyze these interviews. The five themes that emerged from the analysis were as follows: strengthening of interpersonal communication through social support, increased personal awareness through becoming more mindful and reflective, a spiritual awakening, effective ways of dealing with stress, and living life in balance by taking hold of one's life. This study increased the authors' understanding of effects/benefits, adherence, and application of MBSR techniques for women in midlife. It is concluded that MBSR may be a useful intervention for nurses in midlife to develop successful strategies for dealing with stress and to improve their quality of life.