Caregivers - INTEGRIS Health

Promising Outcomes and Lessons
Learned from Intervention Studies
Elaine Wittenberg-Lyles, PhD
Associate Professor
Markey Cancer Center/ Department of Communication
University of Kentucky
Telehospice Project Team
Debra Parker Oliver, MSW, PhD
Social Work
University of Missouri
George Demiris, PhD
Bio informatics
University of Washington
Elaine Wittenberg-Lyles, PhD
Communication Studies
University of Kentucky
Karla Washington, MSW, PhD
Social Work
University of Louisville
Funding by
National Cancer Institute, National Institute of Nursing Research, John A. Hartford
 1.56 million patients who received hospice care
last year in the United States, 83% were age 65 or
greater (National Hospice and Palliative Care
Organization, 2010)
 Caregivers perform nursing tasks and deal with
emotional problems while also witnessing their
loved one’s dying process (Pinquart & Sorensen,
Family Caregivers
 Higher risk for deteriorating physical health, depression,
financial challenges and premature death (Dean, 1995;
Sherwood, Given, Given & von Eye, 2005)
 Although pain control continues to be among one of the
highest priorities for patients and caregivers during end-oflife care (Downey, Engelberg, Curtis, Lafferty, & Patrick,
2009), medication and pain management are among the
top unmet needs of hospice caregivers (Bee, Barnes, &
Luker, 2009)
 Family have identified problems in pain and symptom
management and emotional support from staff
(Hermann & Looney, 2001; Kutner, Kassner, &
Nowels, 2001; Teno et al., 2004)
 Very few, if any, evidence-based caregiver
interventions have been translated to or
implemented in practice settings (Northouse et al,
the use of advanced
communication technologies to
improve the quality of hospice
services delivered to patients
and their families
Telehospice Interventions
 Minimize suffering and improve patients’ /caregivers
quality of life at the end of life
 What are you currently using?
Adaptation and Utilization
 Agency readiness to adopt telehospice
 Felt comfortable utilizing technology, but were less comfortable
introducing new technology for use in the patients’ home
 Assessment of hospice organizations to accept
technology innovation
 Perceived as a useful for documenting meeting processes, staying
informed of care decisions, and developing more collective care plan
Adaptation and Utilization
 Telehospice interventions now appear to be more
readily accepted by nursing and administrative staff
 Assessment of hospice volunteers/coordinators
 Have access to computers, Internet, and email at the hospice agency
and report routine use of cellular phones and email
Current Telehospice Projects
 Web-based worksheet for expert feedback in
community-based hospice
 Hospice Education Network (HEN)
 Internet-based platforms such as Care Pages
 Support mechanism
Evidence base for Telehospice
 26 studies identified from indexed databases (Parker
Oliver et al, in press)
Provider attitudes
Patient/family values
Clinical outcomes (only assessed in 3 studies)
Hospice Philosophy- Relevant
Hospice Interdisciplinary Team Members: Required to
meet for plan of care every 15 days
Patient and Family are the unit of care- and member
of care plan team
Patient and Family autonomy in decision making
Preliminary work
 Do Patients and Family routinely participate in the
interdisciplinary care plan meetings?
 Survey of hospices in Missouri- 0%
 National survey of social workers
 75% never had a family attend
 23% seldom
 0% routinely had family attend meeting
 Problems preventing attendance
Care needs of patient
Distance to office
Confidentiality as people wait in office
Time involved for team members
Intervention: Conceptual Model
Designing an Intervention
Pilot Research
(National Cancer Institute R21)
2 Phase- Mixed Methods Study
 Phase 1 Comparison/Control- 6 months
Administer measures for consenting patients
Videotape team meetings for consenting patients
 Phase 2 Intervention
Administer measures
Videotape team meetings
Two hospice programs- total of 5 teams
Feasibility: Videotape meetings and observe
Impact: Interviews
Caregiver Pain Medicine Questionnaire
Caregiver and Patient Quality of Life
R21 Results
 Total N= 75 caregivers (Phase 1= 41 Phase
 75 caregivers took care of 68 patients
R21 Results
 Caregiver perceptions of pain medications
 The subscale reluctance to report was significantly associated
with phase (P < .01) and with baseline score (P < .03).
 More likely to report pain and more tolerant of pain
 No significant difference in administration of pain medication
 Quality of life
 No significant differences in caregivers or patients
Current Project
 The ACTIVE Intervention to Improve Hospice
Caregiver Pain Management
Multi-site RCT
500 caregivers
4 years
Web based video-conferencing
R01NR011472 , D. Parker Oliver PI, Wittenberg-Lyles, Co-I
ACTIVE: Assessing Caregivers for Team
Intervention via Video Encounters
 Using secure Internet
connection caregivers and
patients can join the hospice
IDT and participate as a
member of the team
 Requires yearly subscription
to website, high speed
Internet and webcam
Specific Aims
Test effectiveness – caregiver’s ability to manage pain
2. Evaluate cost-effectiveness
3. Evaluate potential for translation
In 2009 there were only 114 active NIH
grants in palliative care, less than 1% of
the total funded research from NIH
Example – The Van
R 21 Results- Communication
 Meetings are led primarily by nurses
 Interpersonal communication and information flow are not
always efficient
 Sometimes a struggle for control rather than collaboration
 Collaboration-- Requests for clarification and the offering
of information
 Caregivers are active participants and ask numerous
questions, especially related to pain control
 Although pain issues make up more than a third of the
team discussions, if caregivers are not present, their
perceptions and concerns about pain management issues
are not discussed
Example- “Here’s my problem”
Caregiver Talk
Example – “He’s 92…”
Caregiver Interviews
It’s almost like they bring the hug. You’re
isolated in your own home and family
members don’t even come by. And it’s like
you have that hand on your shoulder with the
phones and the faces…and it made a big
Example - Providing support
Example – “I feel like I’m lying”
Caregiver Interviews
 “The nurses that were coming out here were
fine…but it was just nice to get other
people’s input, too.”
 Another caregiver stated that she was
impressed to learn that “a whole team of
people” worked together to provide care for
her husband.
And for hospice staff
… my mind was narrowed to a point where I
thought that the “team” was the team that
was here [in the agency office], not realizing
and accepting that the team also included
the family and patients. Even though I
could say it…I didn’t feel it.
Staff Interviews
 A medical director noted, “…it helps me take
better care of the patient. I know what to
do better when I can talk to them and see
 “It’s really nice to observe how other
members of our team interact with
[caregivers]. I think we can learn from each
Translational Lessons
 Recruitment
 Special initiatives
 Changing technology
 Different organizational
 The intervention is not only feasible, but that it holds
promise to change caregiver perceptions of pain
management and potentially reduce patient pain.
 Caregivers can and do talk freely to the hospice team
about pain concerns and Hospice staff members are
positive about the intervention.
 The preliminary observation of these encounters is giving
insight on ways hospice team members can improve
collaboration and overall patient care, including patient
safety concerns.
Problem-Solving Therapy for
Hospice Caregivers
Problem Solving Therapy
 PST is defined as “the self-directed cognitivebehavioral process by which a person attempts to
identify or discover effective or adaptive solutions for
specific problems encountered in everyday living.
(D’Zurilla & Nezu, 2007)”
 A=Attitude
 D=Define the problem
 A=Alternatives (generate alternatives for overcoming
the identified obstacles and achieving goals)
 P=Predict (predict positive and negative
consequences and select one)
 T=Try Out (implement the solution in real life and
monitor its effects) (D’Zurilla & Nezu, 2007)
PST and Telehospice
 Compare face-to-face with videophone delivery
 Outcome measures included caregiver anxiety,
quality of life and problem solving abilities, as well as
technical quality of video-sessions and satisfaction of
the intervention
 126 caregivers were recruited in the study
 77 face-to-face and 49 on videophone
 PST delivered via video was not inferior to face to
face delivery.
 Caregiver quality of life improved and state anxiety
decreased under both conditions.
 Audiovisual feedback captured by technology may be
Caregiver interviews
 One participant stated that the videophone provided
“a face behind the voice. I really enjoyed it… You were
here… It was a personal touch. Although you did make
me fix my hair so early in the morning.”
Caregiver interviews
 “At first I thought it would not make a difference… I
really liked it more than I thought I would. This made it
homey, much more personal. You are here with me and
I am talking to you.”
Caregiver interviews
 One of them commented on the slight time delay
between audio and video (“it was distracting at times
in the beginning, because of the time lapse”) and the
other did not see an added element compared to a
regular phone (“it was nice, but I think I can do this just
as well without the picture”). One participant who
experienced problems in establishing a connection
stated “when it works it is great, but I have old lines
here in the house, and sometimes it didn’t work.”
Additional Research Questions
 Who benefits most from the intervention and how
can we identify them upon admission?
 How can staff express empathy over virtual media?
 Do long distance caregivers and residents in the
nursing home have additional benefits?
 What is the cost of the intervention to hospices?
 How does the intervention need to be modified to
translate into everyday practice for hospice
Things to think about…..
 Would incentive payments increase the use of
 What are the ethical issues you see in the use of
 Is it feasible for your hospice to implement the
ACTIVE intervention- why or why not?
Thank you!
Facebook: The Telehospice Project
Email: [email protected]

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