Caregiver Support Groups

I had meeting with Professor Jensen on Wednesday along with two other facilitators for the program. We discussed the logistics of their program and what resources they would need to start implementing it. The goal of having several programs running simultaneously in the fall that Prof. Jensen and I had in mind does not seem viable at this point. With such a small community committed to such a broad topic and with so many other events going on between now and the end of the year, there just aren’t enough people, time and resources to have more groups running, unfortunately. We were able to discuss several possibilities and other community resources we could tap into for future programs (churches, corporate sponsors, etc).

One topic that came up which I found particularly interesting was the trend of aging in place. This new buzz word is basically the movement of adapting the environment to aging seniors rather than displacing them into retirement homes. A friend of mine described it as “old people-proofing” a home rather than “baby-proofing,” when I tried to explain it to her. This movement will prove to be very advantageous to aging seniors who do not wish to move into retirement homes, instead, changing their current homes to address their age-related issues.

It will be interesting to see what ramifications this movement will have on the caregiving landscape. If economic times aren’t hard enough as it is, affecting those who are already living in assisted or independent care facilities with higher fees and expenses, the effects of aging in place may change the landscape of retirement homes or continuing care retirement centers as well.  It may bode well as it’ll force the idea of institutionalized care to evolve and adapt to changing times which would hopefully yield a higher and better standard for quality of life.

For more information on Aging in Place, visit these links: Senior Resource and  Aging in Place Initiative.

Professor Jensen and I met a couple of days ago to finalize a few points of preparation for the upcoming fall programs. We had hoped to set up a time-line of start dates for those who had expressed interest in bring the program to Williamsburg. Of the twenty-seven or so participants we had attend the workshop in June, we have had seven participants step up and volunteer to facilitate programs (some are collaborating to make it easier on their already stressed schedules as many are maintaining regular support groups as well).

As we are getting ready, I have created a database for us to keep track of the facilitators who are currently signed up.  I also drafted a check list of tasks to be completed before each group meeting for each facilitator as it would help CEAGH and Professor Jensen and I keep track and maintain organization for the program. We are hoping to get more facilitators signed up to bring the program to Williamsburg. As things stand we are shooting for a start date of mid-September for most of the programs.

We are still having some difficulties obtaining information for a pre- and post-test design. We are hoping to  get a template from the Georgia VA study which is striving to do a similar task of evaluating the effectiveness of the Caring for You, Caring for Me program. I have a meeting with Professor Jensen and a few facilitators on Wednesday, hopefully we can flesh out more details.

I’ve been doing some research on the low-income community as caregivers and have found some interesting studies on the subject. There are some universal and obvious points when it comes to working with this particular demographic groups such as the social stigma associated with such a population and the limited access they have to certain community resources.

In conducting this research though, I found a different and more interesting way that would redefine what “low-income” is. In his study, Sun (2009) posits a “perceived” income inadequacy perspective when it comes to evaluating and defining families that fall into the low-income category. As researchers in the social science, it would then be important to not only quantify participants in terms of monetary income but also qualify them as well with other aspects that, while not directly causes or associated with the low-income status, but can contribute to it.

An individual’s perception of their environment, such as their perception of being financially stable, their access to community resources, or their ethnicity or social economic status all, in one way or another, affect their low-income status. Most importantly, a caregiver’s psychological health can directly influence their status as a low-income member of the community, which is a large aspect of this study which strives to alleviate both psychological and physical stressors on caregivers. It will be interesting to see if this certain perspective on low-income can be incorporated into the pre- or post-test evaluation we hope to create.

I attended the advisory board meeting for the Help for Caregivers project at the Center for Excellence in Aging and Geriatric Health (CEAGH) on Tuesday. There, I got to meet and discuss the research project with many of the liaisons within the community for aging research, care, and services. Many of the board members had also attended the summit in May and, just recently, the workshop about two weeks prior.

The goal of the meeting was to debrief on the workshop and discuss possible avenues for continuing the project throughout the summer and into the fall and spring of this and the upcoming year. Prof. Jensen went over the events of the workshop and updated the board on where she and I were heading with the project. In preparation for the workshop, I had summarized the evaluations we had the participants fill out after the workshop.

The reviews provided by the participants were very positive, the worse of the criticism was about how hot the room was. Everyone really enjoyed listening to Dr. Haigler speak about providing the Caring for You, Caring for Me program here in Williamsburg. Many expressed their interest in networking during events like these, getting to know other caregivers and support group facilitators in the area and forming a social circle of support and resources. That was one of the top benefits expressed by the participants of the workshop in the evaluations.

After I had briefed the board on the evaluation summary we began discussing the logistics of the project as it would continue through the summer in preparation and into the fall and spring of this and next year. As of right now, Prof. Jensen and I foresee CEAGH’s role in the project as the main resource for the facilitators who plan on providing the program in the area. This would entail providing AV equipment such as projects and screens, making pamphlets and worksheets, and possibly networking with local agents to settle locations for hosting the program and catering.

Two issues arose during the meeting as I had discussed before. The most pressing of the two is reaching out to the low-income or “below-median income” population of the community. We felt that it is important that resources like this should be available especially for that demographic. The biggest problem it seems, according to the literature, is simply raising awareness about such programs.

Other issues such as transportation and marketing are also apparent and we will try to address this as it comes. The other possible problem is simply scheduling the program within the 5-week, 2 hour time slot it was originally designed to be presented in and getting confirmation from the support group facilitators to run the program. I have already made a database that we plan to use to keep track of all these details.

My next meeting with Prof. Jensen is scheduled for early next week. Until then, it is back to researching the low-income demographic in relation to community outreach programs such as this one. I have been in touch with Dr. Haigler since the workshop and we plan to maintain a dialogue throughout the summer and into the fall. I have also been in touch with other resources and contacts in regards to getting research and perspective on how to evaluate the program in a pre- and post-test design.

Back during the beginning of May, I attended the Caregiver Support Group Leader Summit held at Colonial Manor in Williamsburg.  It was the fruition of the Caregiver Support Group Survey that Professor Jensen and I had been working on most of spring semester.  There, we were able to review the findings of the survey and share it with all the support group facilitators who participated in it.  We had keynote speaker Dr. Lindsay from UVA come speak about the pressing issues of caregiving and the rise of the geriatric society (and all the problems that came with it).  The address was both educational and very funny.  Dr. Lindsay had over 100 slides in his presentation and breezed through them like nothing else with wit, humor, and consideration.  The summit concluded with a discussion forum of what needs support group facilitators feel that they require within the local Williamsburg area to continue their service to the community.  Those who attended the summit were invited back to attend a workshop in June that was designed to foster and invigorate the support group community with new leaders through a training program.

Today was that workshop, the Caring for You, Caring for Me Workshop.  The workshop consists of a 5 and a half hour long program that goes into 5 modules of caregiving, with emphasis on the leaders of support groups and how they can build a strong community among their groups.  The training program was developed by the Rosalynn Carter Institute for Caregiving (RCI).  Dr. David Haigler, a consultant from RCI came to present the program to 27 registered local support group facilitators.  The program itself covered topics designed to make implementing and maintaining a support group easier for those who facilitate them.  The atmosphere during the program was relaxed and informal, the presentation was designed with the expectation that those attending are already experienced support group leaders.  Those who attended the program ranged from therapists, psychiatrists, professionals, social workers and family caregivers.  After an interactive introduction of all those who attended, Dr. Haigler began his presentation of the workshop.

I had to leave early before the workshop ended but was able to stay for more than half and am excited to say that I am looking forward to further working with both Dr. Haigler and the facilitators who attended throughout the summer.  Over lunch, Professor Jensen and I were able to briefly chat with Dr. Haigler about some of the logistics of continuing the research to the end of the summer, and perhaps even into the fall.  The main goal of the program was for the facilitators to take back what they had learned and implement it in their own support groups with the hope of raising more awareness for support groups and proliferating their presence in the communities.

We already have hit some bumps as to how the research will continue through the summer as many support groups only meet once a month and the commitment of attending a training program like this might not be available to those who are providing care for their loved ones.  Both Prof. Jensen and I were taking notes throughout the program so it will be interesting to meet with her next week and see where we can go with this in terms of me being the community resource for these support group facilitators as we had planned.

Throughout this semester I have been assisting Adjunct Professor Christine Jensen in her research on caregiver support group leaders. The project is funded by the Williamsburg Community Health Foundation (WCHF), in association with the Center for Excellence in Aging and Geriatric Health (CEAGH), and is set to run until November of 2009. The importance of this study lays its community-based focus and the resources it will provide in an area currently lacking in literature and research. Emphasis is often placed upon the patients of certain illness and diseases, their caregivers frequently left in the background or overlooked.

A caregiver’s mental and physical health is often taken for granted and disregarded due to lack of knowledge and resources available to them in the midst of caring for a loved one. This project has particular significance in Williamsburg as the population of older adults in the area accounts for over a fourth of the community (22%), much higher than the current state (13%) and national average (13%). The goal of this project is intended to help caregivers become more proactive by offering direct education, support, and linkage with community resources.

Data collection and research has played a significant part in the development of the study this past semester. One aspect of the research involved contacting all the local support groups for chronic illnesses, such as Alzheimer’s and Parkinson’s, and speaking with their facilitators to assess the needs and resources required for maintaining a support group. Additionally, a questionnaire designed to gather demographic and logistical data on maintaining a support group was formulated for distribution among the caregiver support group facilitators. The aim of this survey strives to better understand both the personal and professional needs of those in the community who offer this indispensable resource.

On Friday, May 8th, 2009, a Caregiver Support Group Leader Summit will be held in the Williamsburg Area. All individuals who participated in the preliminary survey will be invited to the event, where we will discuss ways in which the community can further support groups and those who run them. The summit will also host geriatrician Dr. Richard Lindsay from The University of Virginia as the keynote speaker, who will lecture on information about and for caregivers and support groups.

This summit will be a valuable resource for individuals in the community who facilitate support groups for chronic illnesses. It will provide a comfortable forum for discussion and raise awareness both within the community and for those who attend on issues of being a caregiver and being cared for as an individual and as a member of the community.

Two months after the summit, a follow-up training session will be held on caregiver support group leadership. For this special program, entitled “Caring for me, Caring for you”, a senior consultant from the Rosalynn Carter Institute for Caregiving, David Haigler, will travel to Williamsburg to hold a full-day training session. This training will supplement information covered during the summit and help relate some applicability to what was learned while augmenting facilitators’ knowledge and resources. The summer research which I hope to conduct will be implemented after this point in the study. With these two resources made available to the local facilitators, it will be important to maintain a rapport with the attendees and assisting them in further implementing what they learned.

During the course of the summer following the integral weeks after the training in June, I hope to interact with the local caregiver support groups as a liaison and a resource. I plan to keep regular contact with all those who attended the “Caring for me, Caring for you” training and maintaining a dialogue with the facilitators to examine how effective the program was. Fieldwork will be an integral part of my research as I plan on immersing myself in the experience of maintaining a support group, attending meetings and aiding in gathering resources for the facilitators.

This blog will be kept as a medium for the field notes and experiences during the course of this research, all important and relevant events and information will be documented in a narrative style exposition. My advisor will be providing the office space for conducting the research and I will also have support from the Center for Excellence in Aging and Geriatric Health in terms of resources and contact. At the end, I will work with my advisor in determining the effectiveness and limitations of such outreach programs for support group facilitators. This project will present exciting and novel prospects into the development of important community-based programs while also providing resources for community members who need it.