Chaplain Encounter Characteristics and Probability of Study Consent Among Palliative Care Patients From the Impact of Hospital-Based Chaplain Support on Decision-Making During Serious Illness in a Diverse Urban Palliative Care Population (PCCS) Study Open Access

Hart, Meaghan Catherine (2014)

Permanent URL: https://etd.library.emory.edu/concern/etds/f4752h45x?locale=en
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Abstract

In this paper, we review the difficulties of palliative care study recruitment, and then use data from the Impact of Hospital-Based Chaplain Support on Decision-Making During Serious Illness in a Diverse Urban Palliative Care Population (PCCS) study to investigate whether friend and family presence is associated with palliative care study consent.

There were 325 patients who consented or declined to consent to a second part of the PCCS study and were included in this analysis. The patients included in the study had an average of 1.3 diaries per patient before consent decision (423 diaries in total). The exposure of interest was presence of family and friends during chaplain encounters, and was analyzed two ways: as 'ever' or 'never,' and as percentage of encounters where family or friends were present. The exposure variable in the model with the binary 'ever' or 'never' coding for family or friend presence was not significant. The model analyzing the proportion of encounters where family or friends were present found a significant 40% decrease in the likelihood of consent for patients who had family and friends present at all PCCS diary encounters compared to patients with family and friends present at none of the PCCS diary encounters. The results indicate that family and friend presence is associated with palliative care study recruitment.

Table of Contents

TABLE OF CONTENTS

Background...........................................................................1

Palliative Care Introduction ..............................................1

Spiritual Care in Palliative Care .........................................1

Family Involvement in Palliative Care .................................3

Value of Research in Palliative Care ...................................4

Challenges in Research ...........................................................5

Securing Approval ..........................................................6

IRB/ethics ............................................................6

Proxy Consent ......................................................8

Securing Buy-in / Engagement ........................................10

Health Providers ...................................................10

Patient Availability ................................................11

Patient and Family Concerns ...................................11

Securing Consent .........................................................13

Family and Friends ................................................14

Demographics ......................................................14

Prognosis ............................................................15

Diagnosis ............................................................15

Perceived Benefits ................................................16

Concluding Points .................................................................17

Purpose ..............................................................................18

Methods .............................................................................20

Study Design ...............................................................20

Sample .......................................................................21

Variables .....................................................................22

Statistical Analyses .......................................................25

Results ...............................................................................28

Sample .......................................................................28

Bivariate Analyses of Consent and Diary Characteristics .......28

Analysis 1 ....................................................................30

Collinearity Assessment ..........................................30

Effect Modification ................................................30

Confounding .........................................................31

Final Model ...........................................................31

Analysis 2 ....................................................................31

Collinearity Assessment ..........................................31

Effect Modification ................................................32

Confounding .........................................................32

Final Model ...........................................................32

Discussion ............................................................................33

Strengths and Weaknesses ..............................................35

Future Directions ...........................................................37

References ...........................................................................38

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