An interventional study of SHARE-CC in Chronic Health Conditions and Family Caregivers, sponsored by Benjamin Rose Institute on Aging. Withdrawn at 4 sites in United States. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2020-08-26.
Sponsored by Benjamin Rose Institute on Aging · Not applicable, Interventional, and Other
SHARE-CC is an intervention for families facing the challenges of chronic conditions. SHARE-CC (Support, Help, Activities, Resources, and Education) addresses the need for both members of a care dyad to be actively involved in current and future care planning. This intervention aims to increase knowledge of services, improve communication skills and well-being, and facilitate the understanding of care values and preferences in order to create a mutually agreed upon care plan. This intervention will be tested in a randomized control trial.
This project offers a unique and timely opportunity to evaluate the feasibility, acceptability, and efficacy of the SHARE-Chronic Conditions psycho-social intervention. The project will adapt the SHARE intervention, for use with dyads facing the challenges of chronic conditions. The six-session SHARE-CC program will be implemented and evaluated using a randomized controlled trial with 240 participants in northern Ohio, the San Diego and San Francisco Bay areas in California, and New Jersey.
The SHARE-CC intervention addresses the need for a structured approach that targets both members of a care dyad and empowers them to be actively involved in current and future care planning. It has great potential to not only improve psychosocial outcomes for families, but to also impact healthcare decision-making and utilization.
Persons with chronic conditions and their caregivers will be interviewed prior to (Time 1) and after participating (approximately 4 months post-Time 1) in the SHARE-CC intervention or PWCC control group.
PWCC:
For CGs to be eligible
Exclusion Criteria:
Six weekly "SHARE for Chronic Conditions (SHARE-CC)" sessions will be conducted in the dyad's home or another location preferred by the participants. A care plan (the SHARE plan) is created that reflects the mutual decisions made by the dyad as a result of their participation in the SHARE-CC program. The SHARE plan is intended to help the caregiver (CG) ensure the PWCC's values and preferences are supported when decisions have to be made in an emergency or in the end stages of the disease. SHARE plans will be documented in a notebook that also contains information on key topics and provides links to local and online resources and services.
Behavioral: SHARE-CC
Six 30-minute weekly telephone calls to provide information and education related to the PWCC's conditions and information about services and care options will be conducted.
Each of the 6 SHARE-CC sessions are structured similarly, starting with the dyad reviewing goals of the session, the CG \& PWCC meeting jointly or separately with the SHARE-CC Counselor around session-specific material, \& ending with a review of material, addressing questions, \& previewing the next session. Sessions titles are: Communication \& Health Education; Care Values; Care Preferences; Family, Friends, \& Community Resources; Taking care of yourself-taking care of each other; \& Take Action Now. The SHARE plan will be developed throughout the sessions and reflects the consensus achieved because of participating in SHARE-CC. It is intended to ensure that the PWCC's values \& preferences are supported when decisions have to be in the future.
Change from Baseline Service Availability Measure (SAM) at 4 months
Asks caregiver if they or their care partner have used any of the 14 services listed (i.e., counseling, support group, respite). If a caregiver has not used a service then their knowledge of the availability of that service is measured
Time frame: Measured at baseline and 4 months later
Change from Baseline Emotional-Intimacy Disruptive Behavior Scale at 4 months
Assesses the extent to which a person engaged in eight behaviors during the past month related to withholding or distorting information about their symptoms and feelings to protect their partner from worrying (i.e., how often have you acted more cheerful than you feel?).
Time frame: Measured at baseline and 4 months later
Change from Baseline Positive Affect and Negative Affect scales (DQoL) at 4 months
To measures affect, we will use the Positive Affect (6 items) and Negative Affect (9 items) scales of the Dementia Quality of Life Instrument (DQoL; Brod et al., 1999), modified to include only the positive and negative affect subscales in order to reduce response burden
Time frame: Measured at baseline and 4 months later
Change from Baseline Dyadic Relationship Scale at 4 months
The Dyadic Relationship Scale includes the Positive Dyadic Interactions and Negative Dyadic Strain subscales.
Time frame: Measured at baseline and 4 months later
Change from Baseline Center for Epidemiological Studies Depression Scale (CES-D) at 4 months
A 20-item measure that asks the respondent to rate how often they experienced symptoms of depression in the past week (i.e., restless sleep). Scores range from 0-60, with scores of 16 or more indicating risk for clinical depression
Time frame: Measured at baseline and 4 months later
Change from Baseline Health Care Utilization at 4 months
Four single items that measure self-reported physician visits, hospital emergency room visits, and overnight hospital stays in the past four months.
Time frame: Measured at baseline and 4 months later
Change from Baseline Disagreements Scale at 4 months
The Disagreements Scale asks respondents five questions about whether they agree or disagree with their care partner about planning, finances, deciding where to go, planning for care, etc.
Time frame: Measured at baseline and 4 months later
Change from Baseline Partners in Health Scale at 4 months
An 11-item scale that measures a person's perception of their level of chronic condition(s) self-management using a 9-point rating scale, with responses ranging from 0=very good to 8=very poor.
Time frame: Measured at baseline and 4 months later
Change from Baseline Care Values Scale at 4 months
A 25-item scale that measures the patient's and caregiver's perceptions of the patient's thoughts and feelings about what is most important to them should they need care in the future related to six specific care values (response options include: very important, somewhat important, not so important).
Time frame: Measured at baseline and 4 months later
Change from Baseline Leisure and Healthy Behaviors Scale at 4 months
The Leisure Scale measures how often the respondent engaged in 14 different activities (i.e., go shopping, play games). Response options range from 1 (not at all) to 3 (often). The 7-item Healthy Behaviors Scale measures how often the respondent engaged in a variety of health related behaviors (i.e., you got an adequate amount of sleep, you ate too much or too little).
Time frame: Measured at baseline and 4 months later
Change from Baseline Preferences for Care Tasks Scale at 4 months
Patients and caregiver's perceptions of the patient's preferences for who they would prefer to help them with 19 care tasks (i.e., shopping, bathing) if they needed assistance in the future. The responses options include: caregiver, other family or friends, and paid providers.
Time frame: Measured at baseline and 4 months later
Plan to share: Undecided
This study is withdrawn, as verified in Aug 2020. You cannot join it, but the record below documents what was studied.
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Benjamin Rose Institute on Aging