ACCESS (Access for Cancer Caregivers for Education and Support for Shared Decision Making)

NCT ID: NCT02929108

Last Updated: 2023-04-20

Study Results

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

489 participants

Study Classification

INTERVENTIONAL

Study Start Date

2017-04-01

Study Completion Date

2021-11-22

Brief Summary

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The project will test the effect of educating and supporting family caregivers of hospice cancer patients on their active participation in shared decision making in the plan of care for their patients.

Detailed Description

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This intervention will target education and emotional support to family caregivers of hospice cancer patients for a shared decision making process in the hospice care plan meetings The intervention ACCESS will consist of three components:

1: a Facebook group to provide the education and support; 2. web conferencing for family members into the hospice interdisciplinary care plan meeting 3, a structured shared decision making process to guide the team discussion.

Participants (family caregivers) will be randomly assigned to one of three groups, usual care, Facebook only, and Access.

The specific aims are to:

1. Evaluate the effect of access on family caregiver anxiety, pain knowledge and patient pain.
2. Evaluate the effect of Facebook groups as educational emotional support for family caregivers
3. Assess staff and family caregiver satisfaction with the shared decision making process.

Conditions

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Cancer Pain

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

A pragmatic cluster randomized controlled trial will randomly assign hospice sites (cluster) to 2 of 3 groups: 1) Enhanced usual care 2) Enhanced usual care and private Facebook group 3) Enhanced usual care, private Facebook group, and ACCESS. Each hospice site (cluster) will go through 2 arms of the intervention but the family caregiver participants will only complete one arm.
Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Enhanced Usual Care

The family caregivers in his group will receive usual hospice care which has been enhanced as the staff have been trained in shared decision making.

Group Type NO_INTERVENTION

No interventions assigned to this group

Facebook

The family caregivers in this group only participates in the Facebook groups, not in the shared decision making

Group Type EXPERIMENTAL

Facebook

Intervention Type BEHAVIORAL

Participants will be enrolled in a Secret Facebook group for social support and education

ACCESS

The family caregivers in this group participates in Facebook and web conferencing for shared decision making

Group Type EXPERIMENTAL

Facebook

Intervention Type BEHAVIORAL

Participants will be enrolled in a Secret Facebook group for social support and education

ACCESS

Intervention Type BEHAVIORAL

Intervention will have two components.

1. Participants will be enrolled in a Secret Facebook group for social support and education
2. Participants will use web conferencing technology to participate in their interdisciplinary team meeting

Interventions

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Facebook

Participants will be enrolled in a Secret Facebook group for social support and education

Intervention Type BEHAVIORAL

ACCESS

Intervention will have two components.

1. Participants will be enrolled in a Secret Facebook group for social support and education
2. Participants will use web conferencing technology to participate in their interdisciplinary team meeting

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Is caregiving for a patient enrolled in the participating hospice
* Over 18 years of age
* Is caregiving for a patient with a diagnosis of cancer
* Willing to have a Facebook account and post at least 1x per week if in intervention group

Exclusion Criteria

* No one under the age of 18
* Is caregiving for a patient enrolled in hospice agencies other than those participating in the study
* Unwilling to participate in social media
* Is caregiving for a patient with a diagnosis other than cancer
* Is caregiving for a patient with a life expectancy of less than 2 weeks
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Cancer Institute (NCI)

NIH

Sponsor Role collaborator

Washington University School of Medicine

OTHER

Sponsor Role lead

Responsible Party

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Debra Parker Oliver

Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Debra Oliver, PhD

Role: PRINCIPAL_INVESTIGATOR

Washington University School of Medicine

Locations

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Hospice Compassus

Columbia, Missouri, United States

Site Status

CrossRoads Hospice

Kansas City, Missouri, United States

Site Status

Barnes Jewish Hospice

St Louis, Missouri, United States

Site Status

Countries

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United States

References

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Parker Oliver D, Demiris G, Washington KT, Pitzer K, Ulrich C. The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process. Telemed J E Health. 2022 Mar 21;28(11):1682-9. doi: 10.1089/tmj.2021.0555. Online ahead of print.

Reference Type DERIVED
PMID: 35324322 (View on PubMed)

Oliver DP, Washington KT, Pitzer K, Popejoy L, White P, Wallace AS, Grimsley A, Demiris G. Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice. Support Care Cancer. 2022 Mar;30(3):2679-2691. doi: 10.1007/s00520-021-06631-w. Epub 2021 Nov 25.

Reference Type DERIVED
PMID: 34825279 (View on PubMed)

Starr LT, Bullock K, Washington K, Aryal S, Parker Oliver D, Demiris G. Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers. J Palliat Med. 2022 Apr;25(4):596-605. doi: 10.1089/jpm.2021.0302. Epub 2021 Nov 18.

Reference Type DERIVED
PMID: 34793244 (View on PubMed)

Provided Documents

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Document Type: Study Protocol and Statistical Analysis Plan

View Document

Related Links

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http://www.siteman.wustl.edu

Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

Other Identifiers

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5R01CA203999

Identifier Type: NIH

Identifier Source: secondary_id

View Link

2006270

Identifier Type: -

Identifier Source: org_study_id

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