Robert Wood Johnson Foundation Final Narrative Report Questions
1. What measurable goals did you set for this project and what indicators did you
use to measure your performance? To what extent has your project achieved
these goals and levels of performance?
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We are pleased to have served XX adult caregivers and XX children total
during the entire grant period in our various health team programs. Many of
these clients utilized more than one of the numerous health services available
to them.
We successfully re-established the health team at KSN and it is flourishing.
We have a health team manager, family nurse practitioner, two mental health
therapists, a community worker, a child development specialist, and an
evaluator. Additionally, the health team is closely supported by Edgewood’s
kinship director, RUTH’S TITLE, OTHER?
The Health Team was introduced to the rest of Edgewood’s staff and was
successfully integrated into Edgewood’s kinship services. Edgewood staff
were provided with regular updates on health team services at weekly staff
meetings. Health team staff members teamed up with other Edgewood staff
members to learn about their roles and their clients and to build mutual
beneficial systems of referral. As we come to the close of this grant we are
pleased that our health team has become a key fixture in Edgewood kinship
services and is relied on appropriately by both staff and clients.
At the beginning of the project we modified our family health needs
assessment. We engaged in this modification process using input from staff
and clients to ensure that the tool adequately covered all the health issues that
arise for kinship families while respecting clients needs for privacy and not
overburdening staff with unnecessary paperwork. We have provided copies of
this health assessment tool to all participating KSSP sites in California. This
tool enables sites to determine to assess child and caregiver health and mental
health needs and to plan responsive services accordingly.
Originally we determined that we would work with expert consultation to
create a tool with which to determine local resources to support health teams.
After further analysis we determined that we had the internal resources to
develop this tool, relying on the expertise of Edgewood’s Institute for the
Study of Community-Based Services research staff to develop this. We
developed and distributed the Agency Health Services Questionnaire which
was designed to help each KSSP site determine its administrative and
community resources as well as its current challenges.
DID WE BACK TRANSLATE OUR TOOLS INTO SPANISH, TAGALOG
AND CHINESE?
We are pleased to report that San Mateo KSSP site has established a health
team and that their health services are flourishing. Our Edgewood health team
was involved in setting up the health related services in San Mateo. Our
Family Nurse Practitioner participated in hiring the nurse for San Mateo and
acted as her supervisor during her tenure. (UPDATE ON SAN MATEO
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STAFFING). The San Mateo counselor attended Edgewood’s weekly case
conferencing to collaborate and support her work. And as the program was
getting started, our health team manager facilitated a meeting with 42 San
Mateo caregivers to collectively develop a list of relevant topics for monthly
health workshops that have been implemented.
Currently San Bernadino County is working on developing health services and
Edgewood’s health team staff is actively supporting their efforts.
For other health team development at KSSP sites please see our response to
question #2.
We are pleased to report that Edgewood has secured further funding to allow
health team services to continue uninterrupted after the completion of this
generous grant funding period. We believe this is testimony to how successful
the program has been and how integral health services have become to our
Kinship program.
We are very pleased to have produced an extensive program model manual
that we disseminated to each KSSP site. This product is detailed in the
bibliography.
We are also pleased to have widely disseminated information about kinship
health services through numerous presentations at national and regional
conferences which are also detailed in the bibliography.
2. Did the project encounter internal or external challenges? How were they
addressed? Was there something RWJF could have done to assist you?
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Our most difficult challenge during the course of this project was implementing
health teams at other KSSP sites across California. While we consistently encouraged
all the KSSP sites to adopt a health team component and to offer them assistance in
implementing health services, a limited number (see above) have actually responded
with the development of new services. We see this as a challenge that was beyond the
control of Edgewood, the other KSSP sites and RWJF. The current budget situation in
California is difficult and many KSSP sites report working hard just to stay afloat and
are unable to focus on developing new services. Indeed, two of the KSSP sites that
were providing the services of a public health nurse to clients have folded completely.
Support for KSSP services is quite limited especially in this post 9-11 and Iraq war
period that has many state and federal agencies focused on anti-terrorism agendas
rather than such supportive and preventative services. Furthermore, California
Department of Social Services cut the technical assistance funds for KSSP sites
during a significant portion of the grant period. While these funds were eventually
reinstated, this did result in an inconsistent ability to travel to sites an work face to
face with KSSP site staff to develop health services.
However, while the external climate was a difficult one for achieving wide
replication of Kinship health services we are pleased to have developed
and disseminated our program model manual as well as individual tools
for assessing health needs. And we contend that our outreach efforts have
established Edgewood as a model program that other KSSP sites will
contact when they are in a position to develop and implement health
services. Indeed, we plan to work with San Bernadino County on their
implementation efforts beyond the grant period.
3. Have there been other sources of support?
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The California Endowment provided $XX for the period of XXX – XXX to support
the reinstatement of Edgewood’s kinship health services and the dissemination of the
kinship health services model and support for additional KSSP sites developing
health services.
The California Department of Social Services provided $XXX in technical assistance
funds for the period of XXX - XXX to enable XXXX.
We received a Proposition 10 grant that allowed us to expand our services for
families with children ages 0-5 years. The grant allotted $XX for the period of XXX –
XXX.
Caregivers who receive health services organized and successfully applied for money
from First Five California to develop a physical fitness for Edgewood’s kinship
caregivers. They received $5,000 for the period of XXX – XXX. The “Grannys a GoGo program runs 2-3 times per week and introduces clients to a variety of exercise
forms as well as to nutrition and wellness information. The program is hosted at
Edgewood’s family center and has been supported by our health team manager and
our nurse in-kind.
EPSDT Dollars??????
WE NEED TO OUTLINE IN-KIND SUPPORT WE PROVIDED TO THE
PROJECT INCLUDING FACILITIES, EQUIPMENT ETC.
HEALTH TEAM VAN FUNDING?
4. What lessons did you learn from undertaking this project?
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We gained deeper understandings into the nature of the health concerns for the
population we serve and how to best address these concerns. For example, we
learned more about the kinds of chronic illnesses that are common for kinship
caregivers. This prompted us to seek out new strategies for supporting caregivers
around chronic illness. We incorporated a new program, utilizing the evidencebased Stanford Model for Chronic Disease Self- Management. Thus far the
Edgewood’s Research Director, Nurse Practitioner, Nurse Intern and two
caregivers living with chronic diseases have undergone the intensive Stanford
training, presented by the Stanford Patient Education Research Center. Stanford
will continue to provide technical assistance. This program, titled “Let’s Live
Well: Self-Management Techniques for Healthy Living” will be co-facilitated by
the nurse intern and a trained caregiver and will teach caregivers how to better
manage their diseases and live healthier lives. The first session ran in May 2004,
with 14 caregivers enrolled, and we plan to expand this program extensively over
the next year, pending secured funding. We are pleased to be able to respond to
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the needs of our caregivers struggling with chronic diseases in an empowering
and positive manner.
We learned the value of having a nurse practitioner who is dedicated to kinship
caregiver families. It took some time for the entire kinship program to learn how
to best refer to the nurse and utilize her skills but over the past three years the
health care component of our program has proved to be very successful and
supportive for clients.
We learned how challenging it is to try and mentor other KSSP sites and support
them in developing health care services without being able to offer them concrete
financial assistance. While we consistently encouraged all the KSSP sites to adopt
a health team component and to offer them assistance in implementing health
services, the majority were unable to develop new services. Indeed, three of the
KSSP sites who had public health nurses providing services no longer have these
services (indeed, two of these sites have folded altogether). This is certainly not a
criticism of the KSSP sites. The current budget situation in California is difficult
and many KSSP sites report working hard just to stay afloat and are unable to
focus on developing new services. Indeed, support for these services is quite
limited, especially in a post 9-11 and Iraq war period that has many state and
federal agencies focused on anti-terrorism agendas rather than such supportive
and preventative services. Furthermore, California Department of Social Services
cut the technical assistance funds for KSSP sites for a significant portion of the
funding period. This resulted in sites having fewer resources available and made it
less possible for Edgewood to travel extensively to sites to support health team
replication.
5. What impact do you think the project has had to date? Who can be contacted a
few years from now to follow up on the project?
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We are pleased to have worked hard to disseminate information about health
services for kinship families as part of our mission during this funding program.
We have attended numerous conferences where we presented both information
about the specific health needs of kinship families, how to develop health services
for this population, and findings from our studies on caregiver health and the
services we provide. (We include a list of all these conference activities under
question 7). While we do not have any evidence of the impact these presentations
have had on audience members, we have received positive feedback from
conference attendees and many professionals have expressed interest in our work
and requested more information from us, including our HealthyKin Program
Manual.
We developed the HealthyKin Program Manual that offers a new model for health
care services for kinship families. We disseminated these manuals to KSSP sites
throughout California (free of charge) and also sent them to interested recipients
nationally who we made contact with at conferences or through other kinship
related forums. This manual offers guidance to programs who are interested in
developing health services for kinship families.
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We are pleased to have conducted an extensive quantitative study on the families
who participated in this project, in order to better understand the impact of our
work and share those findings with other researchers and agencies. Below is a
detailed explanation of the measures we utilized and a brief discussion of our
findings.
Analysis of HealthyKin Data
02/01/01-08/30/04
Family Demographics: During the project period from February 1 2001 through August
30 2004, 126 caregivers and 238 children were referred to HealthyKin from families who
were in the Kinship Support Network (KSN). These individuals were referred because
their community worker assessed them as having a particular medical or mental health
need requiring additional specialized services from the health team. Among the
caregivers there were 121 females. For all caregivers the median age was 61. Their
ethnicity was 97 (77%) African American; 19 (15%) Latino/Hispanic; 5 (4%)
White/Caucasian; 2 (2%) Native American; 1 (1%) Filipino; and 2 (2%) Other/Unknown.
Caregivers’ reported educational level showed 38 (30%) had some college or
professional school; 30 (24%) were high school graduates; 19 (15%) biological greatgrandchildren; 10 (8%) elementary or middle school; 3 (2%) college graduates and 25
(20%) unknown. Fifteen children were missing demographic information. Children’s
gender was more evenly divided than for caregivers with 122 Males and 101 Females.
Children’s median age was 10. The three most frequently reported relationships to
caregivers were as follows: 162 (73%) biological grandchildren; 24 (11%) biological
nieces/nephews with the remaining 17 (7%) a variety of biological and non-biological 5
(2%).There were 179 (80%) African American; 27 (12%) Latino/Hispanic; 4 (2%) Native
American; 2 (1%) Filipino; 1 (0.5%) White/Caucasian; 1 (0.5%) Asian; and 9 (4%)
Other/Unknown.
Assessment Panel: We conducted an analysis of a panel of assessment instruments
administered to caregivers in the Kinship Support Network that were referred to
HealthyKin. This panel consisted of a 10-Item Child Health Questionnaire, adapted from
the Child Health Questionnaire-PF50 (Landgraf, Abetz & Ware 1996); the SF-12v2
Health Survey (Ware, Kosinski, Turner-Bowker & Gandek 2002); and the Family Needs
Scale adapted with the author’s permission (Dunst, Trivette & Deal 1988). These
measures were given at time of intake to HealthyKin (T1) and at 12 months follow-up or
earlier if a case was graduated/closed or transferred (T2).
10-Item Child Health Questionnaire: At intake, caregivers reported that Global Health
(GH) for 236 children was significantly below national norms for non-Caucasian
children. We selected this norm group for comparison because more than 90% of KSN
children are non-Caucasian. Caregivers also reported that these children disrupted usual
Family Activities (FA) significantly more than the normative sample. Finally, their
physical health and/or their emotions and behaviors had significantly more of a limiting
affect on caregivers Personal Time (PT) than the norm group. (See Table 1).
Table 1. 10-Item Child Health questionnaire at Intake (T1)
Item Label
Global Health (GH)
Family Activity (FA)
Parental Time (PT)
*** p<.0001;
KSN Sample n
Norm Mean & S.D.
KSN Mean & SD
236
238
238
68.0 & 18.9
82.8 & 25.4
79.9 & 27.8
39.2a *** & 29.6
19.2b *** & 32.5
15.4b *** & 24.2
a=lower score means poorer health; b=lower score means greater impact/limit
Analysis of scores at T1 and T2 revealed a significant change over time for children’s
reported family disruption (FA) with children placing a greater limit on the family’s
ability to engage in normal activities, but no significant changes were reported for GH
and PT. (See Table 2)
Table 2. 10-Item Child Health Questionnaire T1 to T2 Analysis
Item Label
GH
FA
PT
* p<.05;
KSN Sample n
T1 Mean & SD
T2 Mean & SD
Mean
Difference
86
86
86
41.5 & 28.6
36.4a & 30.7
-5.1 n.s.
16.3 & 20.1
13.9b & 19.3
-2.4*
b
13.2 & 21.1
12.0 & 23.7
-1.2 n.s.
a=lower score means poorer health; b=lower score means greater impact/limit
SF-12v2 Health Survey: One-hundred nineteen caregivers that were referred to
HealthyKin completed this health measure at intake (T1). Their Physical and Mental
Component Summary (PCS and MCS) scores were significantly below those of national
norms for women ages 55-64. We selected this age range for females because for this
sample of kin caregivers more than 90% are female and have a median age of 61. ( See
Table 3)
Table 3. SF-12v2 at Intake (T1)
Item Label
Physical Component
Mental Component
KSN Sample n
Norm Mean & S.D.
KSN Mean & SD
119
119
46.3 & 8.7
50.1 & 8.2
41.3a *** & 6.5
32.1a *** & 8.6
*** p<.0001;
a=lower score means poorer health
When we compared intake (T1) SF-12v2 scores to annual/graduation (T2) scores for 49
kin caregivers, they were essentially unchanged, showing no significant differences. (See
Table 4)
Table 4. SF-12v2 T1 to T2 Analysis
Item Label
KSN Sample n
T1 Mean & SD
T2 Mean & SD
Mean
Difference
PCS
MCS
49
49
40.9 & 7.2
33.4 & 9.0
40.9a & 7.1
32.9 & 10.2
0.06 n.s.
-0.48 n.s.
a=lower score means poorer health
Family Needs Scale: Forty-five caregivers in these families completed the Family Needs
Scale at intake (T1) and again at graduation/closing or transfer (T2). Previously, we
performed a factor analysis of the 31 FNS items using a principle factor model. Initial
communalities were squared multiple correlations. The two largest eigenvalues were 9.4
and 1.5, which suggested a two-factor solution. Two factors were extracted and rotated
using a varimax rotation. Factor loadings greater than 0.40 were used in interpreting the
meaning of the two factors. Factor 1, containing 12 items, we labeled “socio-emotional
support”. Factor 2 was comprised of 17 items and was called “tangible support”. Results
of this analysis for 45 families indicated significant reductions in frequency of expressed
need for both socio-emotional and tangible supports. (See Table 5)
Table 5. Family Needs Scale T1 to T2 Analysis
Item
Label
KSN
Sample n
T1 Mean
& SD
T2 Mean
& SD
Mean
Difference
Wilcoxon
Signed-Rank
Factor 1
socioemotional
Factor 2
tangible
45
34.6 & 11.9 a
23.8 & 11.1 a
-10.8
.0001***
45
39.3 & 15.5 a
26.9 & 10.9 a
-12.4
.0001***
*** p<.0001;
a=lower score means less frequent need
Discussion: As with previously reported studies of the kin caregiver population, our
sample group was predominantly female, African American grandmothers. They had
more formal educational experience than caregivers in other studies with 30% having
some college. Their median age of 61 was several years older than for women in other
samples, and their health status, requiring referral to HealthyKin, was likely related to
their being older. Children’s demographics resemble those in other studies.
At intake to HealthyKin, caregivers reported that their children were significantly below
national norms for non-Caucasian children on three scales—global health, disruption of
routine family activities, and limiting caregivers’ personal time. This is consistent with
other studies of KSN children and youth whose functioning and behaviors are well below
comparable national norms, a finding that in part may be explained by their experiences
of abuse and neglect (Cohon, Hines, Cooper, Packman & Siggins 2003). Analysis of
repeated measures for 86 children enrolled in HealthyKin showed that all three scales
declined over time, and in fact, disrupting the family’s routine activities was significantly
lower (worse) after 12 months. We noted in another recently completed study that KSN
children not in HealthyKin had scores significantly below national norms in behavioral
functioning, and most of these did not improve over time. These data showing no positive
changes have led to KSN program modifications with increased services for children and
youth including mental health support and after school recreation activities for younger
children.
Similarly to children’s scores at intake, 119 caregivers’ physical and mental health
composite scores on the SF-12v2 at T1 were significantly below national norms. Because
this subgroup of KSN clients were referred to HealthyKin due to health problems, this
finding is not surprising. Previous research with KSN caregivers found them to be
significantly below national norms for females ages 45-64 on all eight subscales of the
SF-36 General Health Survey (Cohon et al 2003). Many of these women have chronic
health conditions so it was not unusual that 49 of them who completed repeated measures
had no changes in scores over time from T1 to T2. We had conducted a preliminary
analysis of HealtyKin late in 2003 and were aware of their medical status. Therefore, to
specifically address this situation, in April of 2004, we sent the HealtyKin nurse, a
student nursing intern, and two caregivers with chronic conditions to be trained at the
Stanford Patient Education Center in their Chronic Disease Self-Management Program
(CDSMP). We have completed one cycle of CDSMP with a group of caregivers with
chronic conditions, calling our HealtyKin program Let’s Live Well, and a second group is
currently underway.
Forty-five caregivers completed a modified 31-item Family Needs Scale (FNS) at intake
and again at graduation or closing/transfer (Dunst, Trivette & Deal 1988). Although our
other assessment data showed that children’s behavior continued to disrupt family
activities, and caregivers’ health showed little change over time, women indicated on the
FNS that they were experiencing greatly reduced needs over time. There were highly
significant differences showing lower scores in the two principal factors on this measure,
socio-emotional and tangible needs.
While this sample of female caregivers reported significantly less frequent need for
socio-emotional and tangible support over time, the picture that emerges from these data
are of families in which children are profoundly affecting their older relative caregivers,
whose self-reported health is poor when compared to national norms. The magnitude of
these differences at intake and the lack of improvement for children and caregivers in the
areas of behavior and health led KSN program managers to increase child-focused
services and implement a program to manage chronic diseases for caregivers.
Edgewood’s Institute for the Study of Community-Based Services continues to evaluate
outcomes for these newer services and program staff will review findings and interpret
these, making modifications in program services when this is indicated.
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To follow up on the impact of our health team services please contact Health
Team Manager, Richard Klotz at 415-865-3000.
6. What are the post-grant plans for the project if it does not conclude with the grant?
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Edgewood’s health team has been a strong success and Edgewood’s
administration is committed to maintaining health services for kinship clients. We
currently expect to be able to offer the majority of the services we developed and
implemented while receiving the generous funding from The Robert Wood
Johnson Foundation. These services are briefly detailed below:
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Nurse Practitioner providing health advocacy and home visits to clients.
Therapy for children, adults and families
Nutrition counseling
Fitness and exercise program for grandparent caregivers
Chronic Disease Self-Management workshops
 Monthly health workshops
 Mentorship for developing health programs at KSSP sites.
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We currently have successfully applied for funding to support the majority of the
above endeavors and we are in the process of seeking additional funds to ensure
that the programs go uninterrupted. While the generous funding from The Robert
Wood Johnson Foundation and The California Endowment is ending currently,
we have successfully applied for funding from the following sources that will help
us maintain our services.
 The California Wellness Foundation (Rick, amount and what allocated
for?)
 First Five of California allocated $5,000 for a fitness program for
kinship caregivers.
 First Five of California allocated ($$$$??? Rick) for the Kinstart
Program to serve kinship families raising children ages 0-5 years.
 Kellogg??
 EPSTDT ???
 Technical Assistance ???
 Edgewood Matching??
 Other???
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Overall, the past three years of health services have deeply embedded the
commitment of both providing these services to our families and helping to build
services for KSSP sites across California. Thus, we are pleased that these health
services are now an integral part of Edgewood’s workings and we plan to
continue to advocate for them at regional and national meetings and provide
guidance and mentorship to all KSSP sites if they find themselves able to increase
their capacities for serving the health needs of clients.
7. With a perspective on the entire project, what have its key publications and
national/regional communications activities? Did the project meet its
communications goals? Please complete the Bibliography.
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We produced the HealthyKin Program Manual, a resource guide for KSSP sites to
support them in developing health services for kinship families.
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We have attended numerous conferences and presented on material from our
HealthyKin work. Please see the bibliography for a complete list of conference
presentations and for copies of those presentations.