Presentation on theme: "Telehospice: Promising Outcomes and Lessons Learned from Intervention Studies Elaine Wittenberg-Lyles, PhD Associate Professor Markey Cancer Center/ Department."— Presentation transcript:
Telehospice: 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 Elaine Wittenberg-Lyles, PhD Communication Studies University of Kentucky Debra Parker Oliver, MSW, PhD Social Work University of Missouri Funding by National Cancer Institute, National Institute of Nursing Research, John A. Hartford Foundation Karla Washington, MSW, PhD Social Work University of Louisville George Demiris, PhD Bio informatics University of Washington
Background 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, 2003)
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-of- life care (Downey, Engelberg, Curtis, Lafferty, & Patrick, 2009), medication and pain management are among the top unmet needs of hospice caregivers (Bee, Barnes, & Luker, 2009) Background Family Caregivers
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, 2010) Background
the use of advanced communication technologies to improve the quality of hospice services delivered to patients and their families Telehospice
Minimize suffering and improve patients’ /caregivers quality of life at the end of life What are you currently using? Telehospice Interventions
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 goals Adaptation and Utilization
Telehospice interventions now appear to be more readily accepted by nursing and administrative staff members 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 Adaptation and Utilization
Web-based worksheet for expert feedback in community-based hospice Hospice Education Network (HEN) Internet-based platforms such as Care Pages Support mechanism Current Telehospice Projects
26 studies identified from indexed databases (Parker Oliver et al, in press) Use Provider attitudes Patient/family values Clinical outcomes (only assessed in 3 studies) Readiness Cost Evidence base for Telehospice
Hospice Philosophy- Relevant Principles 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
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
Outcomes Feasibility: Videotape meetings and observe Impact: Interviews Outcomes: Caregiver Pain Medicine Questionnaire Caregiver and Patient Quality of Life
R21 Results Total N= 75 caregivers (Phase 1= 41 Phase 2=34). 75 caregivers took care of 68 patients
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 medications No significant difference in administration of pain medication Quality of life No significant differences in caregivers or patients R21 Results
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 Current Project
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 1.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
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 R 21 Results- Communication
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 difference.
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 them.” “It’s really nice to observe how other members of our team interact with [caregivers]. I think we can learn from each other.”
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. Findings
Problem-Solving Therapy for Hospice Caregivers Telehospice
PST is defined as “the self-directed cognitive- behavioral 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)” Problem Solving Therapy
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) ADAPT
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 PST and Telehospice
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 sufficient Results
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.” Caregiver interviews
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 providers? Additional Research Questions
Would incentive payments increase the use of telehospice? What are the ethical issues you see in the use of telehospice? Is it feasible for your hospice to implement the ACTIVE intervention- why or why not? Things to think about…..
www.telehospice-project.org Facebook: The Telehospice Project Email: firstname.lastname@example.org@uky.edu Thank you!