Cecelia I. Roscigno

Impaired Cerebral Autoregulation and 6-Month Outcome in Children with Severe Traumatic Brain Injury: Preliminary Findings

The objective of this study was to describe the incidence of impaired cerebral autoregulation and to describe the relationship between impaired cerebral autoregulation and outcome after severe pediatric traumatic brain injury (TBI). We prospectively examined cerebral autoregulation in 28 children ≤17 (10 ± 5) years with a Glasgow coma scale score <9 within the first 72 h of pediatric intensive care unit admission. Children with isolated focal TBI were excluded. Glasgow outcome scores (GOS) were collected at hospital discharge, as well as 3 and 6 months after severe TBI. GOS <4 reflected poor outcome. Cerebral autoregulation was impaired in 12/28 children. An autoregulatory index <0.4 was associated with GOS <4 at 6 months (p = 0.005). Impaired cerebral autoregulation, early after severe pediatric TBI, was associated with a poor 6-month outcome.

Divergent Views of Hope Influencing Communications Between Parents and Hospital Providers

This study evaluated parents’ and health care providers’ (HCPs) descriptions of hope following counseling of parents at risk of delivering an extremely premature infant. Data came from a longitudinal multiple case study investigation that examined the decision making and support needs of 40 families and their providers. Semistructured interviews were conducted before and after delivery. Divergent viewpoints of hope were found between parents and many HCPs and were subsequently coded using content analysis. Parents relied on hope as an emotional motivator, whereas most HCPs described parents’ notions of hope as out of touch with reality. Parents perceived that such divergent beliefs about the role of hope negatively shaped communicative interactions and reduced trust with some of their providers. A deeper understanding of how varying views of hope might shape communications will uncover future research questions and lead to theory-based interventions aimed at improving the process of discussing difficult news with parents.

Parents’ Experiences Following Children’s Moderate to Severe Traumatic Brain Injury: A Clash of Cultures

Little is understood about parents’ experiences following children’s moderate to severe traumatic brain injury (TBI). Using descriptive phenomenology, we explored common experiences of parents whose children were diagnosed with moderate to severe TBI. Parents from across the United States (N = 42, from 37 families) participated in two semistructured interviews (~ 90 minutes in length and 12 to 15 months apart) in the first 5 years following children’s TBI. First interviews were in person. Second interviews, done in person or by phone, facilitated updating parents’ experiences and garnering their critique of the descriptive model. Parent themes were (a) grateful to still have my child, (b) grieving for the child I knew, (c) running on nerves, and (d) grappling to get what my child and family need. Parents reported cultural barriers because of others’ misunderstandings. More qualitative inquiry is needed to understand how the knowledge, attitudes, beliefs, and culture-based expectations of others influence parents’ interactions and the family’s adjustment and well-being.

Addressing spasticity-related pain in children with spastic cerebral palsy

&NA; Children with spastic cerebral palsy (CP) often suffer pain as a result of their spasms. Some studies have suggested that the pain experienced by these children may be poorly controlled or respond poorly to treatment, Limited research is available that addresses the treatment of pain due to spasms in children. Therefore, clinicians do not have empirical evidence to guide their decisions. Many current treatment options have not been tested for their effect on pain. Previous research has been guided more by the ability of these treatments to increase functional abilities. Pain also is an important indicator of quality of life; however, this has been overlooked in research.

Children's longing for everydayness: Life following traumatic brain injury in the USA

Primary objective: Little is known about life after traumatic brain injury (TBI) from the childs perspective. Research design: This descriptive phenomenological investigation explored themes of childrens experiences following moderate-to-severe TBI. Methods and procedures: Inclusion criteria: (1) 6–18 years of age at injury; (2) moderate-to-severe TBI; (3) ≤3 years since injury; and (4) English speaking and could participate in an interview. Children participated (n = 39) in two interviews at least 1 year apart. A preliminary model was developed and shared for participants’ input. Main outcomes and results: Six themes emerged: (1) it is like waking up in a bad dream; (2) I thought going home would get me back to my old life, but it did not; (3) everything is such hard work; (4) you feel like you will never be like the person you were before; (5) it is not all bad; and (6) some people get it, but many people do not. Conclusions: Social support was important to how children adjusted to changes or losses. Most children did adjust to functional changes by second interviews. Children had a more difficult time adjusting to how others defined them and limited their possibilities for a meaningful life.

Pushed to the margins and pushing back: a case study of one adult's reflections on social interactions after a traumatic brain injury sustained as an adolescent.

&NA; Traumatic brain injury (TBI) is a worldwide chronic health problem. Current empirical approaches to defining factors that contribute to a meaningful life after TBI have been limited to the biomedical perspective. Such a limited paradigm fails to address how people with TBI find meaning and act on and are acted on by the world in which they live. Between 2005 and 2007 an in‐depth qualitative case study was conducted. The primary data source was a mans retrospective journal writings about his life after sustaining a severe TBI. The qualitative perspective of symbolic interactionism framed this case study analysis. Meaning is strongly influenced by the ways in which the social world interacts with the injured person. Despite an accumulation of negative social experiences, a traumatically brain‐injured person can also assign positive meanings to the quality of his or her life. This has been ignored or explained away as a defense mechanism in previous investigations. More studies that include unbiased methods able to capture subjective experiences and what they mean to individuals with TBI are needed. This information will lead to more relevant interventions and better outcome instruments for use with this population.

Challenging Nurses’ Cultural Competence of Disability to Improve Interpersonal Interactions

ABSTRACT Worldwide, at least 6.9 billion people have an impairment-producing health condition. Insensitive encounters with healthcare providers (HCPs) can result in negative appraisals, fear, and avoidance, but little is known about what things are commonly perceived as insensitive. A review of published narratives describing negative encounters with HCPs was conducted. Narrative analysis was used to compare, contrast, and synthesize six themes describing the common negative encounters: (a) ignoring or minimizing their knowledge, (b) detached interpersonal interactions, (c) placing a negative skew on their life quality, (d) lack of HCP knowledge related to their complete needs, (e) assuming they should be asexual and childless, and (f) an inherent power differential. The medical model of disability is perceived by individuals with impairment-producing health conditions to inform negative encounters perceived as insensitive. This preliminary knowledge is important so we can address educational needs, plan future research questions, and establish clinical practice improvements.

Parent perceptions of early prognostic encounters following children’s severe traumatic brain injury: ‘Locked up in this cage of absolute horror’

Abstract Objective: Little guidance exists for discussing prognosis in early acute care with parents following children’s severe traumatic brain injury (TBI). Providers’ beliefs about truth-telling can shape what is said, how it is said and how providers respond to parents. Methods: This study was part of a large qualitative study conducted in the US (42 parents/37 families) following children’s moderate-to-severe TBI (2005–2007). Ethnography of speaking was used to analyse interviews describing early acute care following children’s severe TBI (29 parents/25 families). Results: Parents perceived that: (a) parents were disadvantaged by provider delivery; (b) negative outcome values dominated some provider’s talk; (c) truth-telling involves providers acknowledging all possibilities; (d) framing the child’s prognosis with negative medical certainty when there is some uncertainty could damage parent–provider relationships; (e) parents needed to remain optimistic; and (f) children’s outcomes could differ from providers’ early acute care prognostications. Conclusion: Parents blatantly and tacitly revealed their beliefs that providers play an important role in shaping parent reception of and synthesis of prognostic information, which constructs the family’s ability to cope and participate in shared decision-making. Negative medical certainty created a fearful or threatening environment that kept parents from being fully informed.

Periventricular leukomalacia: pathophysiological concerns due to immature development of the brain.

&NA; Periventricular leukomalacia (PVL) is a result of injury and necrosis of myelinated fibers around the lateral ventricles. PVL is now considered the principal form of brain injury in preterm infants. This injury can have long‐term effects on physical, motor, sensory, cognitive, and social development. Some proposed pharmacological treatments being considered to aid in prevention of this injury are raising concerns because they have failed to show evidence of efficacy or have potential for deleterious long‐term effects. Current treatment is aimed at injury prevention; therefore, nurses play a critical role. Awareness of the pathophysiologic concerns about preterm neonates can help nurses focus their assessments to identify patients at risk.

Healthcare providers' caring: Nothing is too small for parents and children hospitalized for heart surgery

Background Parents of children with congenial heart disease (CHD) face frequent healthcare encounters due to their child’s care trajectory. With an emphasis on assuring caring in healthcare, it is necessary to understand parents’ perceptions of healthcare providers’ actions when their child undergoes heart surgery. Objectives To describe parents’ perceptions of healthcare providers’ actions when their child is diagnosed with CHD and undergoes heart surgery. Methods This is a qualitative study with in‐depth interviews. Parents of children with CHD were interviewed twice after surgery. We analyzed data using directed content analysis guided by Swanson Caring Theory. Results Findings of the study indicate that parents perceive caring when providers seek to understand them (knowing); accompany them physically and emotionally (being with); help them (doing for); support them to be the best parents they can be (enabling); and trust them to care for their child (maintaining belief). Conclusions Healthcare providers play an irreplaceable role in alleviating parents’ emotional toll when their child undergoes cardiac surgery. Providers’ caring is an integral component in healthcare. HighlightsChildrens diagnosis of CHD and heart surgery are stressful for parentsHealthcare providers play a vital role in shaping parents’ hospital experiencesInteractions among healthcare providers and families create a culture of caringSwanson Caring Theory captures healthcare providers’ caring actions in hospitalsCaring actions are those through which providers strive to connect with parents