Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life.

Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). Objectives: To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. Design: A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. Results: Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. Conclusions: Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.

Fetal alcohol spectrum disorder (FASD) and suggestibility: A survey of United States federal case law.

This article summarizes four federal criminal cases that illustrate how suggestibility can impact defendants with FASD in the criminal justice system. Four cases were identified via a Google Scholar search of "suggestibility" and "fetal alcohol" in the federal case law database. These cases are illustrative of how FASD can affect legal defendants, including vulnerability to peer pressure, being easily manipulated, insufficient comprehension of legal proceedings, difficulty in assisting legal counsel, learning impairment, acquiescence or higher levels of suggestibility, and difficulty understanding consequences. The cases presented here provided the most comprehensive discussion of FASD and suggestibility issues but are by no means an exhaustive review of case law. Because defendants with FASD are the focal point of this article, we intentionally excluded cases involving eyewitness suggestibility, the suggestibility of child witnesses, and the suggestibility of those under hypnosis. Therefore, this review has been developed to explicate and illustrate problems common to FASD defendants within legal settings, especially regarding risk for suggestibility. The information provided from this discussion may better guide legal professionals who regularly come into contact with persons affected by FASD on how to more readily detect this neurodevelopmental condition and mitigate the likelihood of injustice during criminal proceedings. Additionally, we include suggestions on how to attenuate miscarriages of justice as a result of faulty confessions, wrongful convictions, and vulnerability of suggestibility in persons affected by FASD.

Fetal alcohol spectrum disorders (FASD) and youth firesetting: A call on criminal justice, emergency responder, and fire prevention specialists to become informed.

Central nervous system damage resulting from prenatal exposure to alcohol, often referred to as fetal alcohol spectrum disorders (FASD), commonly manifests as lacking cognitive functioning, problem solving, impulsivity, memory, executive functioning, and social skill deficits. For individuals with FASD, these brain-based deficits translate into impulsive behaviors and poorly thought-out decision-making, coupled with an inability to anticipate and recognize the sometimes very severe consequences of their behaviors. Not unexpectedly, individuals with FASD frequently find themselves disproportionately involved in the criminal justice system and mental health services. For some individuals with FASD, these behaviors can also include firesetting. First responders, like other health and legal professionals, are often unable to recognize the behavioral indicators of FASD, primarily due to a lack of training. As a result, firesetting behaviors are often attributed to deliberate, willful acts of delinquency, a desire to damage property, thrill seeking, or as attempts for personal gain, rather than being viewed as maladaptive attempts to solve problems by individuals who lack the tools to do this in more appropriate ways. These same skill deficits also present when individuals with FASD are interviewed about their involvement in such behaviors, sometimes resulting in confabulation, suggestibility, and false confessions. Further education and training in FASD are vital for first responders if they are to better support individuals with FASD and minimize their chances of becoming involved in firesetting behaviors. Furthermore, this training and education will help ensure that first responders can intervene in more appropriately when crisis situations do occur. This article will outline key behavioral symptoms of FASD as well as provide first responders with suggestions as to how to best support individuals when FASD is suspected. The brief quote that follows highlights some of the key challenges facing individuals with FASD and how poor decision-making and impulsiveness can result in severe consequences for the individual and those around them.