Understanding the Lived Experience of Caring for a Child With Severe Cerebral Palsy: A Critical Step Toward Psychologically Informed Family-Centered Care.

OBJECTIVE: The purpose of this study was to explore the lived experience of parents who care for children with cerebral palsy who function at a Gross Motor Function Classification System Level V, their beliefs about pain and non-pain-related emotional distress, and what it means to provide care and comfort. METHODS: A phenomenological research design was used. Eleven participants were involved in this study. Pilot interviews informed the interview guide. Data were collected via participant journals and semi-structured interviews and analyzed using van Manen's framework for understanding experience. Trustworthiness criteria were met through a variety of strategies to ensure a rigorous research process. RESULTS: Four themes were revealed in this study: "life is hard, heavy with burden, worry, and love," "remarkable," "identity transformation and empowerment," and "living a life that is planned, forced with structure and without spontaneity." CONCLUSION: Caring for a child with lifelong needs is complex and requires a sensitive awareness of the contextual factors that impact daily decisions and routines. Understanding the lived experiences of parents who care for children with cerebral palsy Gross Motor Function Classification System Level V is necessary to provide psychologically informed, family-centered care. Comfort theory is presented as a framework for understanding what factors influence comfort and well-being. Understanding the complex nature of comfort for an individual can lead to greater understanding and empathy-driven care. These results will provide a foundation for future studies that aim to enhance pediatric physical therapist care through provider empathy and understanding. IMPACT: Caregiving parent experiences are impactful and play a large role in the life of children with developmental disabilities. Research exploring the lived experience of caregivers may enhance empathy-driven, psychologically informed, family-centered physical therapist care throughout the life course. LAY SUMMARY: If you are a parent who cares for a child with severe cerebral palsy, you have unique experiences that impact day-to-day activities and lifelong planning for your family and child.

A Case of Lemierre Syndrome in the Era of COVID-19: All That Glitters Is Not Gold.

We report a case of a 15-year-old female presenting with a serious multisystemic inflammatory illness during a surge of SARS-CoV-2 (COVID-19) cases in our county. The initial clinical findings of sore throat and neck stiffness, followed by signs of sepsis, raised suspicion of Lemierre syndrome early in her hospital course. However, the presence of severe respiratory distress, multifocal pneumonia with pleural effusion on chest radiograph, acute kidney injury, and the discovery of coronary artery ectasia, pointed to the new entity "multisystem inflammatory syndrome in children (MIS-C)." Immune modulatory treatment was thus considered. However, progressive neck pain and swelling, coupled with the eventual growth of Fusobacterium necrophorum on blood culture, eventually led to the correct diagnosis of Lemierre syndrome.

The HITECH Act and electronic health records' limitation in coordinating care for children with complex chronic conditions.

While the HITECH Act was implemented to promote the use of electronic health records to improve the quality and coordination of healthcare, the limitations established to the setting of the hospital or physician's office affect the care coordination for those who utilize many health-related services outside these settings, including children with complex and chronic conditions. Incentive-based support or nationally supported electronic health record systems for allied and other healthcare professionals are necessary to see the full impact that electronic health records can have on care coordination for individuals who utilize many skilled healthcare services that are not associated with a hospital or physician's office.