SHARE for Persons With Chronic Conditions and Their Family Caregivers

NCT ID: NCT03289624

Last Updated: 2020-08-26

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

WITHDRAWN

Clinical Phase

NA

Study Classification

INTERVENTIONAL

Study Start Date

2017-08-15

Study Completion Date

2018-08-31

Brief Summary

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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

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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.

Conditions

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Chronic Health Conditions Family Caregivers

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Persons with chronic conditions and their family caregivers will be randomly assigned to a treatment or control group
Primary Study Purpose

OTHER

Blinding Strategy

SINGLE

Participants
No other parties will be masked in the trial

Study Groups

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SHARE for Chronic Conditions

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.

Group Type EXPERIMENTAL

SHARE-CC

Intervention Type BEHAVIORAL

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.

Health Coaching

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.

Group Type NO_INTERVENTION

No interventions assigned to this group

Interventions

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SHARE-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.

Intervention Type BEHAVIORAL

Eligibility Criteria

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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).
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Benjamin Rose Institute on Aging

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Carol Whitlatch, PhD

Role: PRINCIPAL_INVESTIGATOR

Benjamin Rose Institute on Aging

Silvia Orsulic-Jeras

Role: STUDY_DIRECTOR

Benjamin Rose Institute on Aging

Locations

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Southern Caregiver Resource Center

San Diego, California, United States

Site Status

Family Caregiver Alliance

San Francisco, California, United States

Site Status

Geriatric Care Consultant

Ridgewood, New Jersey, United States

Site Status

Benjamin Rose Institute on Aging

Cleveland, Ohio, United States

Site Status

Countries

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United States

References

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Whitlatch, C.J., Clark, P.A., & Schur, D. (2000). COPE: Caregiver Options Program and Evaluation. Final report to nine Cleveland foundations. Benjamin Rose Institute, Cleveland.

Reference Type BACKGROUND

Battersby, M.W., Ask, A., Reece, M.M., Markwick, M.J., & Collins, J.P. (2003). The Partners in Health scale: The development and psychometric properties of a generic assessment scale for chronic condition self- management. Australian Journal of Primary Health, 9(2 & 3), 41-52.

Reference Type BACKGROUND

Druley JA, Stephens MA, Coyne JC. Emotional and physical intimacy in coping with lupus: women's dilemmas of disclosure and approach. Health Psychol. 1997 Nov;16(6):506-14. doi: 10.1037//0278-6133.16.6.506.

Reference Type BACKGROUND
PMID: 9386995 (View on PubMed)

Bass, D. M., Tausig, M. B., & Noelker, L. S. (1988). Elder impairment,social support and caregiver strain: A framework for understanding support's effects. Journal of Applied Social Sciences, 13, 80-117.

Reference Type BACKGROUND

Sebern MD, Whitlatch CJ. Dyadic relationship scale: a measure of the impact of the provision and receipt of family care. Gerontologist. 2007 Dec;47(6):741-51. doi: 10.1093/geront/47.6.741.

Reference Type BACKGROUND
PMID: 18192628 (View on PubMed)

Whitlatch CJ, Feinberg LF, Tucke SS. Measuring the values and preferences for everyday care of persons with cognitive impairment and their family caregivers. Gerontologist. 2005 Jun;45(3):370-80. doi: 10.1093/geront/45.3.370.

Reference Type BACKGROUND
PMID: 15933277 (View on PubMed)

Feinberg LF, Whitlatch CJ. Decision-making for persons with cognitive impairment and their family caregivers. Am J Alzheimers Dis Other Demen. 2002 Jul-Aug;17(4):237-44. doi: 10.1177/153331750201700406.

Reference Type BACKGROUND
PMID: 12184513 (View on PubMed)

Zarit SH, Stephens MA, Townsend A, Greene R. Stress reduction for family caregivers: effects of adult day care use. J Gerontol B Psychol Sci Soc Sci. 1998 Sep;53(5):S267-77. doi: 10.1093/geronb/53b.5.s267.

Reference Type BACKGROUND
PMID: 9750575 (View on PubMed)

Pearlin LI, Schooler C. The structure of coping. J Health Soc Behav. 1978 Mar;19(1):2-21. No abstract available.

Reference Type BACKGROUND
PMID: 649936 (View on PubMed)

Mullan JT. The bereaved caregiver: a prospective study of changes in well-being. Gerontologist. 1992 Oct;32(5):673-83. doi: 10.1093/geront/32.5.673.

Reference Type BACKGROUND
PMID: 1427280 (View on PubMed)

Aneshensel, C.S., Pearlin, L.I., Mullan, J.T., Zarit, S.H., & Whitlatch,C.J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press

Reference Type BACKGROUND

Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969 Autumn;9(3):179-86. No abstract available.

Reference Type BACKGROUND
PMID: 5349366 (View on PubMed)

Brod M, Stewart AL, Sands L, Walton P. Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). Gerontologist. 1999 Feb;39(1):25-35. doi: 10.1093/geront/39.1.25.

Reference Type BACKGROUND
PMID: 10028768 (View on PubMed)

Radloff, L.S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 11, 385-401.

Reference Type BACKGROUND

Radloff, L.S., & Teri, L. (1986). Use of the Center for Epidemiological Studies-Depression Scale with older adults. Clinical Gerontologist, 5, 119-136.

Reference Type BACKGROUND

Ritter PL, Stewart AL, Kaymaz H, Sobel DS, Block DA, Lorig KR. Self-reports of health care utilization compared to provider records. J Clin Epidemiol. 2001 Feb;54(2):136-41. doi: 10.1016/s0895-4356(00)00261-4.

Reference Type BACKGROUND
PMID: 11166528 (View on PubMed)

Lorig, K., Stewart, A., Ritter, P.L., Gonzalez, V., Laurent, D., & Lynch,J. (1996). Outcome Measures for Health Education and other Health Care Interventions. Thousand Oak, CA: Sage Publications, 24-25

Reference Type BACKGROUND

Other Identifiers

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2016-003

Identifier Type: -

Identifier Source: org_study_id

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