The Guided Care Program for Families and Friends


PRINCIPAL INVESTIGATOR:

Jennifer L. Wolff, Ph.D
Department of Health Policy and Management
Johns Hopkins Bloomberg School of Public Health
624 North Broadway, Room 692
Baltimore, MD 21205
E-mail: jwolff@jhsph.edu

For information about Guided Care, please send an email to: guided@jhsph.edu.

OVERALL SNAPSHOT OF CAREGIVER INTERVENTION/PROGRAM:


The Guided Care Program for Families and Friends (GCPFF) is one component of "Guided Care" (GC), a model of primary care for chronically ill older adults that is facilitated by a registered nurse who has completed a supplemental educational curriculum.

The GCPFF melds support for family caregivers with the delivery of coordinated and comprehensive chronic care and seeks to improve the health and well-being of both patients and their family caregivers. The GCPFF encompasses (a) an initial meeting between the nurse and the patient's primary caregiver, (b) education and referral to community resources, (c) ongoing "coaching," (d) a six-session group Caregiver Workshop, and (e) monthly Support Group meetings, all facilitated by the patient's GC nurse.

BACKGROUND RELATED TO THE DEVELOPMENT OF THE INTERVENTION/PROGRAM
:

GC was created to improve the quality and outcomes of care for chonically ill adults with diverse medical needs. In GC, a registered nurse works closely with several primary care physicians (PCPs) to meet the chronic care needs of 50–60 chronically ill patients who are at high risk for heavy use of health services during the coming year.

Using a web-accessible electronic health record (EHR), nurse collaborates with the patient's PCP to facilitate eight clinical processes: (a) assessing the patient at home, (b) creating an evidence-based care plan, (c) promoting patient self-management, (d) proactively monitoring the patient's conditions, (e) coaching the patient to practice healthy behaviors, (f) coordinating patient's transitions between sites and providers of care, (g) facilitating access to community resources, and (h) educating and supporting caregivers.

The inclusion of education and support for patients’ families and friends within GC was motivated by compelling results achieved by a spousal dementia caregiving intervention (6,15), and differences between populations led to the modification to the protocol described here.

This program was informed by intervention studies and meta-analyses, consultation with individuals working in the field, focus groups with community- and employer-sponsored caregiver support groups, and an advisory committee of experts. Insights from these activities were incorporated along with the logistical and resource constraints of contemporary primary care practice.

TARGETED CAREGIVER POPULATION (AGE, ETHNICITY, CONDITION/DISEASE):


Chronically ill older adults with diverse medical needs

INTERVENTION/PROGRAM SPECIFIC OUTCOME MEASURES:

• Caregiver intake form: caregivers’ demographic and health information, a description of assistance they provide, their desire for information and referral, as well as an opportunity to describe caregiving-related challenges, rewards, and strengths. The intake form was developed to maximize the productivity of the meeting by guiding conversation and reducing time spent documenting information.

• Center for Epidemiological Studies Depression (CESD)

• Caregiver Strain Index (CSI)

• Patient Assessment of Chronic Illness Care (PACIC)],

• Work Productivity and Activity Impairment questionnaire, adapted for caregiving

NUMBER OF SESSIONS:


An initial meeting between nurses and patients’ caregivers
Education and referral to community resources
Ongoing coaching
Workshop: Six weekly 90-minute sessions
Monthly support groups

LENGTH OF EACH SESSION:

Initial meeting with caregiver (~30 min)
Education and coaching (as needed)
Workshop (six weekly 90-minute sessions)
Support groups (monthly, 1 hour each)

DESCRIPTION OF SESSION CONTENT:


1) An initial meeting between nurses and patients’ caregivers:
a. individual consultation is emphasis of program
b. in-home initial assessment with the patient and brief in-person meeting with the primary caregiver. Goals of this meeting are to initiate a working relationship with patient's informal supports, to provide a forum for the caregiver to state his or her own needs and concerns and to identify and facilitate relevant education and community services referral.
c. Caregiver intake form to be completed before the meeting.
2) Education and referral to community resources: The nurse disseminates disease- and task-specific print and electronic health education materials and works with representatives from their local Area Administration on Aging office to make referrals to community resources at the time of initial assessments and as issues emerge over time.
3) Ongoing coaching: The nurse is available by phone and e-mail during business hours to address caregivers’ questions and concerns regarding patients’ health needs and interacts during acute health events (or at least quarterly) to assess needs.
4) Workshop: The Workshop emphasizes how to cope with caregiver concerns by building on strengths, reframing challenges, and developing problem-solving skills. Nurses facilitate the Workshop over the course of six weekly 90-minute sessions
5) Support groups: Nurses facilitate 1-hour monthly support group meetings for caregivers. Objectives are to reinforce skills and techniques discussed in the Workshop, cultivate relationships and communication between the nurse and caregivers, and provide caregivers the opportunity to share experiences, emotional support, and practical strategies for coping with difficult situations. Each group self-directs the use of its time (eg, whether to invite speakers or engage in unstructured discussion) and when to hold the meetings.

METHOD OF ADMINISTRATION/DELIVERY:


The GCPFF encompasses (a) an initial meeting between the nurse and the patient's primary caregiver, (b) education and referral to community resources, (c) ongoing "coaching," (d) a six-session group Caregiver Workshop, and (e) monthly Support Group meetings, all facilitated by the patient's GC nurse.

TRAINING:

A registered nurse who has completed a supplemental educational curriculum facilitates this program.A two-phase structured educational curriculum was developed to equip nurses for their role in facilitating the program.
The goal of the first phase of training is to prepare nurses to build their caregiver caseload, to make community referrals, and deliver coaching to caregivers regarding the health needs of the patients through a combination of readings, recorded lectures, case-based group seminars, and applied role-playing activities. The second phase of training teaches group facilitation skills and preparation to deliver the workshop and support Groups.

Additional details can be found on the website: http://www.guidedcare.org/

For more information or to register for the course, go to http://www.ijhn.jhmi.edu. If you have specific questions about the course, please send an email to: GuidedCare@son.jhmi.edu

COST AND TIME CONSIDERATIONS:


Scholarships for Guided Care Nurse Training are available, details online

VIDEO CLIP OF INTERVENTION/PROGRAM:

Available on website: http://www.guidedcare.org/videos.asp?video=Intro

LINK(S) TO WEBSITE:

http://www.guidedcare.org/

DOWNLOADABLE FACT SHEETS:

Available on website: http://www.guidedcare.org/pdf/Guided%20Care%20FAQs.pdf

BRIEF DESCRIPTION OF EVIDENCE:

At 6-month follow-up: caregivers who had gone through the GC intervention had lower depression and caregiver strain scores (0.97 points (p = .14) and 1.14 points (p = .06), respectively) compared to control group caregivers’. Among caregivers who provided more than 14 hours of weekly assistance at baseline, intervention group caregivers’ mean depression and caregiver scores were respectively 1.23 points (p = .20) and 1.83 points (p = .04) lower than control group.

At 18-months follow-up, GC improved the quality of chronic illness care received by multimorbid care recipients but did not improve caregivers' depressive symptoms, affect, or productivity.

Additional results can be found online: http://www.guidedcare.org/studyresults.asp

REPRESENTATIVE PUBLICATIONS/REFERENCES:

Boult C, Giddens J, Frey K, Reider L, Novak T. Guided Care: A New Nurse-Physician Partnership in Chronic Care. Springer Publishing Co., New York 2009.

Wolff, J.L. Giovannetti ER, Palmer S, Wegener ST, Reider L, Frey K, Scharfstein D, Boult C. Caregiving and Chronic Care: The Guided Care Program for Families and Friends. J Gerontol A Biol Sci Med Sci 2009. Vol. 64A, No. 7, 785–791

Wolff JL, Giovannetti ER, Boyd CM, Reider L, Palmer S, Scharfstein D, Marsteller J, Wegener ST, Frey K, Leff B, Frick KD, Boult C. Effects of guided care on family caregivers. Gerontologist. 2010 Aug;50(4):459-70

Additional references available online: http://www.guidedcare.org/

KEYWORDS/SEARCH TERMS:


Caregiving, Chronic disease, Nursing, Primary care

OTHER GENERAL COMMENTS REGARDING INTERVENTION/PROGRAM:


Downloadable toolkits available: http://www.guidedcare.org/news/

For information about Guided Care, please send an email to guided@jhsph.edu.