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Completed

NCT Number: NCT02929108

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

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.

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Key information

Conditions

Cancer Neoplasms Neurologic Manifestations Pain Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Hospice Compassus, Columbia, Missouri, United States

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About this study

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:

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

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Facebook

Behavioral

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

ACCESS

Behavioral

Intervention will have two components.

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

Primary outcomes

  1. Change in Generalized Anxiety Disorder- 7

    Time frame: Upon enrollment, 14 days, 28 days, 60 days and 90 days

    A screening tool to quantify participant's anxiety. The scale ranges from 0-21. A higher score indicates a higher level of anxiety.

Secondary outcomes

  1. Change in Family Pain Questionnaire - Experience

    Time frame: Upon enrollment and 28 days

    A scale which measures caregiver's experience dealing with patient pain. Scale ranges from 0-70. A higher score indicates higher pain experience.

  2. Change in Family Pain Questionnaire - Knowledge

    Time frame: Upon enrollment and 28 days

    A scale which measures pain knowledge. The scale ranges from 0-90. A higher score indicates a higher knowledge of pain.

  3. Change in Caregiver Quality of Life

    Time frame: Upon enrollment, 14 days, 28 days, 60 days and 90 days

    Four question scale that measures caregivers quality of life. Scale ranges from 0-40. Higher score indicates higher quality of life.

  4. Perceived Involvement of Care Scale

    Time frame: Upon enrollment, 14 days, 28 days, and 90 days

    A scale measuring perceived involvement of care. Scale ranges from 13-65. Higher score indicates higher perceived involvement in care.

  5. Public Health Questionnaire (PHQ 9)

    Time frame: Upon enrollment, 14 days, 28 days, 60 days, and 90 days

    A measure of depression. Scale ranges from 0-27. A higher score indicates higher depression.

  6. Edmonton Symptom Assessment

    Time frame: Upon enrollment, 14 days, 28 days, 60 days, and 90 days

    A scale that measures various patient symptoms as reported by caregiver such as pain, fatigue, depression, anxiety, appetite, and nausea. Scale ranges from 0-90. A higher score indicates higher degree of symptoms.

  7. Zarit Burden Scale

    Time frame: Upon enrollment and 28 days

    A scale that measures the level of burden on caregiver. Scale ranges from 0-28. A higher score indicates greater burden.

  8. Caregiver Communication Questionnaire (CCCQ)

    Time frame: 14 days, 28 days, and 60 days

    A scale that measures the level of perception of caregiver centered communication by hospice staff. Scale ranges from 30-150. A higher score indicates greater perception of caregiver centered communication.

Sponsors and collaborators

Lead sponsor

Washington University School of Medicine

Other

Collaborators

  • National Cancer Institute (NCI)

Registry information

Official study title

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

Acronym: ACCESS

Important dates

Study start
2017
Primary completion
2021
Study completion
2021
First posted
Oct 10, 2016
Registry last updated
Apr 20, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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