Chronic Health Conditions, Family Caregivers
Conditions
Keywords
Care Planning, Care Values and Preferences
Brief summary
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.
Detailed description
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.
Interventions
BEHAVIORALSHARE-CC
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.
Sponsors
Benjamin Rose Institute on Aging
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
OTHER
Masking
SINGLE (Subject)
Masking description
No other parties will be masked in the trial
Intervention model description
Persons with chronic conditions and their family caregivers will be randomly assigned to a treatment or control group
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
PWCC: * Living in geographic area of organizations delivering service * Living at home rather than in an institutional setting * Have a family CG as defined below * Confirmed diagnosis of at least one chronic illness (e.g., heart disease, diabetes, COPD, arthritis, kidney disease, stroke, HIV-AIDS, etc.) * Require assistance with two or more activities of daily living (e.g., shopping, managing medications, dressing) or receives help with complex medical care tasks (e.g., wound care, preparing special meals); and * Short Blessed error score between 0 and 6 demonstrating normal cognitive function. For CGs to be eligible • must be the PWCC's spouse/partner, adult child, in-law, grandchild, step-child, or other close family member who has or will have primary responsibility for providing assistance to the PWCC
Exclusion criteria
* Out of geographic areas * a primary diagnosis of a neurocognitive disorder (e.g. Alzheimer's Disease or related dementia) * a mental health condition (e.g., schizophrenia, bipolar disorder, major depression) * a traumatic brain injury, * intellectual or developmental disability * individuals experiencing extreme difficulty adjusting and coping to the diagnosis * individuals in the terminal phase of a chronic condition (i.e., eligible for Hospice).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change from Baseline Service Availability Measure (SAM) at 4 months | Measured at baseline and 4 months later | 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 |
| Change from Baseline Positive Affect and Negative Affect scales (DQoL) at 4 months | Measured at baseline and 4 months later | 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 |
| Change from Baseline Emotional-Intimacy Disruptive Behavior Scale at 4 months | Measured at baseline and 4 months later | 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?). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change from Baseline Center for Epidemiological Studies Depression Scale (CES-D) at 4 months | Measured at baseline and 4 months later | 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 |
| Change from Baseline Dyadic Relationship Scale at 4 months | Measured at baseline and 4 months later | The Dyadic Relationship Scale includes the Positive Dyadic Interactions and Negative Dyadic Strain subscales. |
| Change from Baseline Health Care Utilization at 4 months | Measured at baseline and 4 months later | Four single items that measure self-reported physician visits, hospital emergency room visits, and overnight hospital stays in the past four months. |
| Change from Baseline Disagreements Scale at 4 months | Measured at baseline and 4 months later | 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. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Change from Baseline Care Values Scale at 4 months | Measured at baseline and 4 months later | 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). |
| Change from Baseline Preferences for Care Tasks Scale at 4 months | Measured at baseline and 4 months later | 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. |
| Change from Baseline Partners in Health Scale at 4 months | Measured at baseline and 4 months later | 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. |
| Change from Baseline Leisure and Healthy Behaviors Scale at 4 months | Measured at baseline and 4 months later | 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). |
Countries
United States
Outcome results
None listed