%0 Journal Article %J J Palliat Med %D 2013 %T Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit. %A Doorenbos, Ardith Z %A Starks, Helene %A Bourget, Erica %A McMullan, D Michael %A Lewis-Newby, Mithya %A Rue, Tessa C %A Lindhorst, Taryn %A Aisenberg, Eugene %A Oman, Natalie %A Curtis, J Randall %A Hays, Ross %A Clark, Jonna D %A Baden, Harris P %A Brogan, Thomas V %A Di Gennaro, Jane L %A Mazor, Robert %A Roberts, Joan S %A Turnbull, Jessica %A Wilfond, Benjamin S %K Child %K Child, Preschool %K Extracorporeal Membrane Oxygenation %K Female %K Humans %K Infant %K Infant, Newborn %K Intensive Care Units, Pediatric %K Male %K Palliative Care %K Patient Care Team %K Prognosis %K Retrospective Studies %X

BACKGROUND: Extracorporeal life support (ECLS) is an advanced form of life-sustaining therapy that creates stressful dilemmas for families. In May 2009, Seattle Children's Hospital (SCH) implemented a policy to involve the Pediatric Advanced Care Team (PACT) in all ECLS cases through automatic referral.

OBJECTIVE: Our aim was to describe PACT involvement in the context of automatic consultations for ECLS patients and their family members.

METHODS: We retrospectively examined chart notes for 59 consecutive cases and used content analysis to identify themes and patterns.

RESULTS: The degree of PACT involvement was related to three domains: prognostic uncertainty, medical complexity, and need for coordination of care with other services. Low PACT involvement was associated with cases with little prognostic uncertainty, little medical complexity, and minimal need for coordination of care. Medium PACT involvement was associated with two categories of cases: 1) those with a degree of medical complexity but little prognostic uncertainty; and 2) those that had a degree of prognostic uncertainty but little medical complexity. High PACT involvement had the greatest medical complexity and prognostic uncertainty, and also had those cases with a high need for coordination of care.

CONCLUSIONS: We describe a framework for understanding the potential involvement of palliative care among patients receiving ECLS that explains how PACT organizes its efforts toward patients and families with the highest degree of need. Future studies should examine whether this approach is associated with improved patient and family outcomes.

%B J Palliat Med %V 16 %P 492-5 %8 2013 May %G eng %N 5 %R 10.1089/jpm.2012.0536 %0 Journal Article %J AIDS Patient Care STDS %D 2011 %T "You must take the medications for you and for me": family caregivers promoting HIV medication adherence in China. %A Fredriksen-Goldsen, Karen I %A Shiu, Cheng-Shi %A Starks, Helene %A Chen, Wei-Ti %A Simoni, Jane %A Kim, Hyun-Jun %A Pearson, Cynthia %A Zhao, Hongxin %A Zhang, Fujie %K Adult %K Anti-HIV Agents %K Caregivers %K China %K Family %K Female %K Health Knowledge, Attitudes, Practice %K HIV Infections %K Humans %K Incidence %K Interviews as Topic %K Male %K Medication Adherence %K Middle Aged %K Motivation %X

China is experiencing a rapid increase in the incidence of HIV infections, which it is addressing proactively with broad implementation of antiretroviral therapy (ART). Within a cultural context extolling familial responsibility, family caregiving may be an important component to promote medication adherence for persons living with HIV in China. Based on 20 qualitative interviews with persons living with HIV and their family caregivers and a cross-sectional survey with 113 adults receiving HIV care at Beijing's Ditan outpatient clinic, this mixed-methods study examines family caregivers' role in promoting adherence to ART. Building upon a conceptual model of adherence, this article explores the role of family members in supporting four key components enhancing adherence (i.e., access, knowledge, motivation, and proximal cue to action). Patients with family caregiving support report superior ART adherence. Also, gender (being female) and less time since ART initiation are significantly related to superior adherence. Since Chinese cultural values emphasize family care, future work on adherence promotion in China will want to consider the systematic incorporation of family members.

%B AIDS Patient Care STDS %V 25 %P 735-41 %8 2011 Dec %G eng %N 12 %R 10.1089/apc.2010.0261