An Exploratory Analysis of Pediatric Hospice and Palliative Care Dialogue on Social Media

8/13/2019 An Exploratory Analysis of Pediatric Hospice and Palliative Care Dialogue on Social Media

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Agenda

! Overview! Team of Researchers! Opening a line of research inquiry the 1st

study! Future research! Future collaborations

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Overview

! Area of research interest in pediatric hospice/palliative care.

! Research to date has focused on hospiceorganizations and questions about access toand cost of care for terminally-ill children andtheir families.

!This study is our initial inquiry to a new lineof research exploring mobile health (mHealth)and social media in pediatric hospice/palliativecare

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The Team

" Dr. Lisa C. Lindley, PhD, RN (UT -Nursing)" Dr. Wenjun Zhou, PhD (UT-Business)"

Dr. Jennifer Mack, MD (Harvard- Medicine)" Dr. Xueping Li, PhD (UT Engineering)" Warren De Wit (Research Assistant)" Health Information Technology & Simulation

Laboratory (HITS)

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Background

!On any given day in the US as few as 6 terminally-ill childrenaccess hospice and palliative care, even though there are over50,000 pediatric deaths annually.

!One of the barriers to pediatric hospice and palliative care is alack an understanding of and experience with pediatric hospiceand palliative care by pediatric clinicians.

!Social media has emerged in recent years as a means ofinteractions among people in which they create, share,exchange and comment on content among themselves invirtual communities and networks, even in hospice care.

!Despite the benefits, little is known about the dialogue thatproviders and clinicians are engaged in about pediatric hospiceand palliative care.

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Purpose

The purpose of this study is to explore

pediatric hospice and palliative care dialogue

using social media.

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Methods

" Design: Prospective, descriptive qualitativedesign

" Data Source: DiscoverText(http://discovertext.com/)

"Sample: 200 pediatric hospices and hospitals

" Statistical Analysis: Descriptive statistics anddata mining techniques

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Results

#We anticipate that there will variation in thetype and volume of pediatric hospice and

palliative care messages.

#It is expected that most messages frompediatric hospices and hospitals will be with

pediatric clinicians and the content of the

messages will be information-seekingexchanges about pediatric hospice and

palliative care.

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Conclusions

The findings for this study will provide

important insight into the need for educational

and referral information by pediatric clinicians

caring for terminally ill children about a

critical end-of-life care service.

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Future Research

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Future Research

Blog & Twitter

http://www.pallimed.org

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Future Research

Intervention: Mobile App

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Future Research

Intervention: Pilot & Focus Group

$ Review of the literature$ Pilot: CA pediatric clinicians - Referring to

CA pediatric hospices$ Pilot & Focus Group: Pallimed.org

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Future Research

Evaluate: Outcomes & Survey

$Outcomes: CA hospice data to assess impacton pediatric hospice use over time

$Survey: Use mobile app to survey clinician oneffectiveness and efficiency of mobile app inimproving understanding and use of pediatrichospice/palliative care

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Future Collaborations

Computer science Engineering Geography Sociology Social Work Medicine Information science

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References

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ChiPPS. A call for change: Recommendations to improve the care of children living with life-threatening conditions. Alexandria,VA: National Hospice and Palliative Care Organization. 2001.

Institute of Medicine. When children die improving palliative and end-of-life care for children and their families. Washington,D.C.: National Academy Press; 2003.

Baker JN, Torkildson C, Baillargeon JG, Olney CA, Kane JR. National survey of pediatric residency program directors andresidents regarding education in palliative medicine and end-of-life research.J Palliat Med. 2007;10(2):420-9.

Sheetz MJ, Sontag-Bowman MA. Pediatric palliative care: An assessment of physicians' confidence in skills, desire for training,and willingness to refer for end-of-life care.Am J Hospic Palliat Med. 2008;25(2):100-5.

McCabe ME, Hunt EA, Serwint JR. Pediatric residents' clinical and educational experiences with end-of-life care.Pediatr.2008;121(4):e731-7.

Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians' perceptions of and preferred timing for pediatric palliative care.Pediatr. 2009;123(5):e777-e782.

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Huang WC, Trotman A, Shlomo G. Efficient information seeking on a mobile device. SIGIR 2008 workshop on Mobile InformationRetrieval. Singapore: 2008.

Fayyad U, Pietetsky-Shapiro G, Smyth P. From data mining to knowledge discovery in databases.AI Magazine. 1996;37-54.

Franks B. Taming the big data tidal wave: Finding opportunities in huge data streams with advanced analytics.Hoboken, NJ:

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Abernethy AP, Wheeler JL, Bull J. Development of a health information technology-based data system in community-basedhospice and palliative care.Am J Prev Med. 2011;40(552):S217-S224.

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An Exploratory Analysis of Pediatric Hospice and Palliative Care Dialogue on Social Media