ONLINE SUPPORT GROUPS FOR PARKINSON'S PATIENTS; A PILOT STUDY OF EFFECTIVENESS
Morton A. Lieberman PhD University of California, San Francisco
Andre Winzelberg PhD Stanford University
Mitch Golant PhD The Wellness Community
Marie Wakahiro MSW University of California, San Francisco
Our study set out to examine the effectiveness of online professionally led support groups for people with Parkinson's disease (PD). Specifically, we asked if participation in these groups' improved their quality of life and their perception of PD symptoms, and reduced their level of depression. Patient's coping with a PD are a good candidates for online interventions. As a progressive, chronic disease, patients face increasing problems; sleep disturbances, difficulty with swallowing, difficulties in managing the activities of daily living (ADLs), bladder and bowel disturbances, and sexual dysfunction. PD patients become increasingly disabled and frequently, less mobile. As a consequence of disease progression, patients experience many psychosocial consequences stemming from their illness. It has been estimated that from 40 to 60 percent of patients suffer from clinically significant depression (1,2). Patients' quality of life is often diminished (3,4,5). To address these various problems, many patients turn to support groups for help. ……..
THE STUDY
Procedures
The absence of empirical studies of PD support groups led us, prior to the development of the intervention, to conduct a survey study of current practices in PD support groups. Based on a stratified random sample survey of 17 National Parkinson's Foundation sponsored groups in California (24) we found that the basic structure of group meetings was similar across groups and included introduction of new members, roll call, "checking in with other members", a speaker, discussion time, and refreshments/social time. Topics of discussion included traveling with PD, wills, trusts, durable power of attorney for healthcare, nursing home planning, humor/personal stories surrounding disease, respite services, question & answers update on members/friends, displays of famous people with PD, advocacy (letter writing to elected officials), communication with neurologist, keeping a daily log, legal/financial issues, applying for Medicare, new treatments, medication, exercise, and coping with depression.
Based on the survey, we found that 20% were new to the groups (0-1 year), 20% participated from 1-2 years; and the remaining participants were long-term members of their group. We found that members learned about their group from friends and relatives (40%) newspaper articles (23%); 2 their physician or other health professional (20%); The National Parkinson's Foundation (10%), and the Internet (2%). Patients who participated in the support groups appear to be mostly older, retired, Caucasian, and relatively well educated. The sample was characterized by moderate to severe PD. Many had been coping with the illness over a number of years, and 68% > 5 years. The illness has clearly taking its toll on the sample, with 64% reporting clinically relevant depression. Finally, using selected interviews and survey questions, we were able to identify issues concerning patients with PD that helped us design the online intervention.
CONCLUSIONS AND IMPLICATIONS
Across all groups, we found a significant improvement in the participants' quality of life. Participants' report of the intensity of PD symptoms shows a more complex pattern. No overall improvement was found. Rather, there is a significant group X time interaction. An inspection of the means shown in table 3 indicates that patients in the general groups reported more intense symptoms after their participation in the support groups. In contrast, the patients in the young diagnosis and the newly diagnosed groups reported lower symptoms. We examined the patients for changes in PD medications during the time they participated in the group to determine if the reduction or increase in symptoms was associated with alterations in their medical management. Of the 32 patients, only 4 (1 from the general groups, 2 from young onset, and 2 from the newly diagnosed) reported any medication changes. Overall, there were no changes in levels of depression. However, we did find a trend in the time X group interaction with the young onset patients showed a reduced level of depression.
Clearly, online groups were helpful to many PD patients. Our findings that those in the young onset and newly diagnosed groups reported symptom improvement may indicate that their perceptions of how their PD symptoms interfered with their lives changed, resulting in viewing their PD symptoms in a new light. The differential between the general PD groups (where they report an increase in symptoms) compared to the decrease in the young and newly diagnosed may be a product of the group characteristics. The relative homogeneity of the younger onset and newly diagnosed groups may have enhanced the group experience, seeing themselves a more alike. Previous research (27) on self help groups reported that similarity among participants was an important enhancer of the group's experience. On the other hand, the fact that the homogenous groups were composed of younger patients who may have been more comfortable with the Internet cannot be ruled out. We do know that after the groups ended only the young and newly diagnosed decided to continue the chat experience by forming chat groups on Yahoo.
Limitations of the study.
The results of this trial are promising; however, more research is needed before this support group format can be recommended to people with PD. The findings reported in this pilot study are limited by several critical methodological compromises. The absence of a non-treatment control group makes it possible that the participants improved as time simply passed. We studied a sample of convenience rather than one from a defined population. It is possible that only those that were likely to improve joined the study. This does not subtract from the efficacy of the groups for those that choose to use them, but does limit the potential to generalize. Longer follow-up assessments are needed to determine whether the intervention effects are maintained. In addition, more detailed information on participants' medical condition and treatments (including physician confirmation of the medical diagnosis) should be obtained. Finally, the attrition rates were high. Ordinarily, the consensus in group therapy is that about 20% drop out after a few meetings. Our rate was 39%, further limiting the possibility of generalization.
In developing OSG's for PD patients, we understood from the onset, that because of the disease, typing would likely be a problem for some. Voice recognition software was a possible solution. However, our Chat software was not compatible with the voice recognition software. For participants who had difficulty typing, we used a makeshift solution in the form of a caretaker who did the typing for the patient. Our experience was mixed, at times the caretaker inserted themselves into group as a participant. The use of an asynchronous group rather than a chat group has been successful in studies of women with breast cancer. Such a format may allow some PD patients to more easily type their responses without experiencing time pressure.
Our pilot provided a base that suggests future studies are worthwhile. High on such a list would be the use of alternative online formats such as asynchronous interactions as well as using a defined population where a randomized trial could be undertaken.
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