Parkinson’s Disease Support Groups in Rural America: Barriers, Resources, and Opportunities

People with Parkinson’s disease who live in rural communities may lack information and support regarding their condition, compared to those in urban or suburban areas. For the study described herein, the researchers sought to gain a deeper understanding of support group experiences of rural Parkinson’s disease stakeholders through merging an interpretive phenomenological design with Community-based Participatory Research (CBPR). Using this merged approach, we collected qualitative data from five focus groups to gain a community perspective. The qualitative data was analyzed thematically, first, and then further explored for an overall essence. The theme, Support Group Benefits: Opportunities for Communication expounded upon the importance of support groups to Parkinson’s disease stakeholders. Barriers to Support Group Participation represented how the disease and the rural living conditions inhibited support group participation. Strategies to Improve Support Group Access demonstrated the different ways that the stakeholders had tried to overcome barriers and strengthen support groups. Notably, some participants discussed ways that support groups could increase their accessibility to more individuals with Parkinson’s living rurally so that they endured as a future resource. The themes and accessibility recommendations that emerged led the researchers to interpret the overall essence of this work as, experiencing support group benefits despite barriers, leaving a legacy.

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Group Experiences and Individual Differences in Stuttering

Journal of Speech Language and Hearing Research ◽

10.1044/2019_jslhr-19-00138 ◽

2019 ◽

Vol 62 (12) ◽

pp. 4335-4350 ◽

Cited By ~ 6

Author(s):

Seth E. Tichenor ◽

J. Scott Yaruss

Keyword(s):

Individual Differences ◽

Support Groups ◽

Support Group ◽

Affective States ◽

Life Outcomes ◽

Self Help ◽

Wide Range ◽

Group Experiences ◽

History Of ◽

Adults Who Stutter

Purpose This study explored group experiences and individual differences in the behaviors, thoughts, and feelings perceived by adults who stutter. Respondents' goals when speaking and prior participation in self-help/support groups were used to predict individual differences in reported behaviors, thoughts, and feelings. Method In this study, 502 adults who stutter completed a survey examining their behaviors, thoughts, and feelings in and around moments of stuttering. Data were analyzed to determine distributions of group and individual experiences. Results Speakers reported experiencing a wide range of both overt behaviors (e.g., repetitions) and covert behaviors (e.g., remaining silent, choosing not to speak). Having the goal of not stuttering when speaking was significantly associated with more covert behaviors and more negative cognitive and affective states, whereas a history of self-help/support group participation was significantly associated with a decreased probability of these behaviors and states. Conclusion Data from this survey suggest that participating in self-help/support groups and having a goal of communicating freely (as opposed to trying not to stutter) are associated with less negative life outcomes due to stuttering. Results further indicate that the behaviors, thoughts, and experiences most commonly reported by speakers may not be those that are most readily observed by listeners.

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Delivering an efficient and effective support group for patients with implantable cardioverter-defibrillators (ICDs): patient perspectives of key concerns and predictors of inclination to attend

BMC Health Services Research ◽

10.1186/s12913-021-06735-3 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Kathryn Murray ◽

Kelly Buttigieg ◽

Michelle Todd ◽

Vicky McKechnie

Keyword(s):

Support Groups ◽

Support Group ◽

Qualitative Data ◽

Implantable Cardioverter Defibrillators ◽

Cardioverter Defibrillator ◽

And Coping ◽

Patients Experience ◽

The Impact ◽

Cardioverter Defibrillators ◽

Patient Concerns

Abstract Background A subset of patients experience psychological distress following insertion of an implantable cardioverter-defibrillator (ICD) and ICD support groups are recommended, however access to these groups is limited. This study aimed: to gauge a better understanding of patients’ key ICD-related concerns; to determine patient interest in a support group and topics deemed helpful to address in a support group; and to examine factors which affect patient inclination to attend. Methods One hundred and thirty nine patients completed the ICD Patient Concerns Questionnaire – Brief (ICDC-B) and a semi-structured survey. Non-parametric tests were used to examine associations and differences in the quantitative data. Qualitative data were analysed using thematic analysis. Results 42% of respondents said they would attend a support group and inclination to attend was associated with higher ICD concerns and a shorter time since implant. Topics considered important to address in a group were information about heart conditions and devices, the impact of an ICD on daily life and coping with fear of shocks. Conclusion We concluded that there is interest in further support amongst many patients and that ICD support groups may be delivered efficiently by targeting patients who have higher levels of ICD concerns and within the first few years after implant.

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An evaluation of Cognitive Stimulation Therapy sessions for people with dementia and a concomitant support group for their carers

Dementia ◽

10.1177/1471301215626851 ◽

2016 ◽

Vol 16 (8) ◽

pp. 985-1003 ◽

Cited By ~ 4

Author(s):

Jan Bailey ◽

Paul Kingston ◽

Simon Alford ◽

Louise Taylor ◽

Edward Tolhurst

Keyword(s):

Support Groups ◽

Support Group ◽

Qualitative Data ◽

Cognitive Stimulation ◽

Structured Interviews ◽

Post Intervention ◽

Cognitive Stimulation Therapy ◽

People With Dementia ◽

Quasi Experimental ◽

The Impact

This research aimed to ascertain the impact of a pragmatic Cognitive Stimulation Therapy course of 10 sessions on the cognitive function of people living with dementia and whether attending a concomitant carers support group was beneficial to carers. A mixed method quasi-experimental approach was adopted; data were collected pre- and post-intervention. The quantitative arm utilised three validated questionnaires rated by the carers. Qualitative data were collected via semi-structured interviews with carers regarding their perceptions of the impact of Cognitive Stimulation Therapy and the carers support group. Quantitative data analysis found no statistically significant differences within or between groups. The qualitative data demonstrated that carers perceived Cognitive Stimulation Therapy had some benefits for the people living with dementia, especially social benefits. Carers also perceived that attending the carers support group was beneficial for them in terms of gaining a better understanding of dementia, developing coping skills and having peer support. The study was limited in scale and further research with a larger sample, using direct measures of the impact of Cognitive Stimulation Therapy with people living with dementia and supplementary research exploring which characteristic of carers support groups are effective would be worthwhile.

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Self-Reported Efficacy of Cannabis and Other Complementary Medicine Modalities by Parkinson’s Disease Patients in Colorado

Evidence-based Complementary and Alternative Medicine ◽

10.1155/2015/874849 ◽

2015 ◽

Vol 2015 ◽

pp. 1-6 ◽

Cited By ~ 22

Author(s):

Taylor Andrew Finseth ◽

Jessica Louise Hedeman ◽

Robert Preston Brown ◽

Kristina I. Johnson ◽

Matthew Sean Binder ◽

...

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Support Groups ◽

Legal Status ◽

Cross Sectional Study ◽

Recent Change ◽

High Rate ◽

Cross Sectional ◽

Metro Area ◽

Cam Use

Introduction. Complementary and alternative medicine (CAM) is frequently used by Parkinson’s disease (PD) patients. We sought to provide information on CAM use and efficacy in PD patients in the Denver metro area with particular attention to cannabis use given its recent change in legal status.Methods. Self-administered surveys on CAM use and efficacy were completed by PD patients identified in clinics and support groups across the Denver metro area between 2012 and 2013.Results. 207 patients (age69±11; 60% male) completed the survey. Responses to individual CAM therapy items showed that 85% of respondents used at least one form of CAM. The most frequently reported CAMs were vitamins (66%), prayer (59%), massage (45%), and relaxation (32%). Self-reported improvement related to the use of CAM was highest for massage, art therapy, music therapy, and cannabis. While only 4.3% of our survey responders reported use of cannabis, it ranked among the most effective CAM therapies.Conclusions. Overall, our cross-sectional study was notable for a high rate of CAM utilization amongst PD patients and high rates of self-reported efficacy across most CAM modalities. Cannabis was rarely used in our population but users reported high efficacy, mainly for nonmotor symptoms.

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Unmasking Parkinson’s Disease: The Relationship of Grit, Exercise, and Quality of Life

Journal of Patient Experience ◽

10.1177/2374373520937171 ◽

2020 ◽

Vol 7 (6) ◽

pp. 1732-1739

Author(s):

Susan G Klappa ◽

Julie A I Thompson ◽

Stuart Blatt

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Support Groups ◽

Physical Therapists ◽

The United States ◽

Community Based ◽

Coping Responses ◽

Home Based

The purpose of this study was to investigate grit, exercise, and quality of life (QOL) among individuals diagnosed with Parkinson’s disease (PD). A sample of convenience was used. A survey which included the grit scale, QOL scale, and open-ended questions was distributed to participants (n = 101, 51 male and 50 female) who are members of online PD support groups across the United States. Data were analyzed by SPSS 25. Grit values averaged 3.65 ± 0.51 for participants (n = 101). When divided into groups, mean grit score for community-based exercisers was 3.78 ± 0.42 and 3.10 ± 0.48 for home-based exercisers. Grit was positively correlated to higher QOL on the Parkinson’s disease quality of life (PDQL; r = +0.293, P = .004). Grit was positively correlated to the emotional component of the PDQL ( r = +0.462, P < .001). Participants with higher grit levels had higher emotional coping responses after being diagnosed with PD, exercised more, and were more willing to self-advocate. With limited rehabilitation visits allowed, physical therapists should be aware of community-based programs to redefine participation roles after diagnosis.

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Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

npj Parkinson s Disease ◽

10.1038/s41531-020-00128-9 ◽

2020 ◽

Vol 6 (1) ◽

Cited By ~ 1

Author(s):

Indu Subramanian ◽

Joshua Farahnik ◽

Laurie K. Mischley

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Social Isolation ◽

Support Groups ◽

Symptom Severity ◽

Social Performance ◽

Social Distancing ◽

Patient Reported

Abstract Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Only individuals reporting a diagnosis of idiopathic PD were included in this analysis. The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely experienced a 55% greater symptom severity than those who were not lonely (P < 0.01). Individuals who documented having a lot of friends had 21% fewer symptoms than those with few or no friends (P < 0.01). Social isolation was associated with greater patient-reported PD severity and lower quality of life, although it is unclear whether this is the cause and/or a consequence of the disease. In essence, the Parkinson pandemic and the pandemic of social isolation have been further compounded by the recent COVID-19 pandemic. The results emphasize the need to keep PWP socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.

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Psychological Characteristics of People with Parkinson's Disease Who Prematurely Drop Out of Professionally Led Internet Chat Support Groups

CyberPsychology & Behavior ◽

10.1089/cpb.2007.9956 ◽

2007 ◽

Vol 10 (6) ◽

pp. 741-748 ◽

Cited By ~ 6

Author(s):

Morton A. Lieberman

Keyword(s):

Parkinson’S Disease ◽

Parkinson's Disease ◽

Support Groups ◽

Drop Out ◽

Psychological Characteristics ◽

Internet Chat

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Evaluation of quality of life and psychological aspects of Parkinson's disease patients who participate in a support group

Dementia & Neuropsychologia ◽

10.1590/1980-57642015dn93000013 ◽

2015 ◽

Vol 9 (3) ◽

pp. 295-300 ◽

Cited By ~ 4

Author(s):

Nathalie Ribeiro Artigas ◽

Vera Lúcia Widniczck Striebel ◽

Arlete Hilbig ◽

Carlos Roberto de Mello Rieder

Keyword(s):

Quality Of Life ◽

Parkinson’S Disease ◽

Parkinson's Disease ◽

Social Phobia ◽

Support Group ◽

Neurodegenerative Disorder ◽

Control Group ◽

Asymmetric Distribution ◽

Cross Sectional

Parkinson's disease (PD) is a neurodegenerative disorder that can dramatically impair patient quality of life (QoL). Objective: To analyze the QoL, motor capacity, depression, anxiety and social phobia of individuals who attended a patient support group (PSG) compared to non-participants. Methods: A cross-sectional study was performed. The sample consisted of 20 individuals with PD who attended a PSG and another 20 PD patients who did not attend a support group for PD patients, serving as the control group (nPSG). All patients answered questionnaires on motor capacity (UPDRS), QoL (Parkinson's Disease Questionnaire- PDQ-39), depression (Beck Depression Inventory), anxiety (Beck Anxiety Inventory) and social phobia (Liebowitz Social Anxiety Scale). To determine data distribution, the Shapiro-Wilk test was performed. For comparison of means, Student's t-test was applied. In cases of asymmetry, the Mann-Whitney test was employed. To assess the association between the scales, Pearson's correlation coefficient (symmetric distribution) and Spearman's coefficient (asymmetric distribution) were applied. For the association between qualitative variables, Pearson's Chi-squared test was performed. A significance level of 5% (p≤0.05) was adopted. Results: Individuals in the PSG had a significantly better QoL (p=0.002), and lower depression (p=0.026), anxiety (p<0.001) and social phobia (p=0.01) scores compared to the nPSG. Conclusion: The participation of PD patients in social activities such as support groups is associated with better QoL and fewer symptoms of depression, anxiety and social phobia.

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