Support groups for family caregivers of persons with dementia in India (innovative practice)

Dementia ◽  
2020 ◽  
pp. 147130122096930
Author(s):  
Neha Lamech ◽  
Monisha Lakshminarayanan ◽  
Sridhar Vaitheswaran ◽  
Sujit John ◽  
Thara Rangaswamy
Keyword(s):  
Family Caregivers ◽  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Caregiver Support ◽  
Facilitating Factors ◽  
Innovative Practice ◽  
Counselling Needs ◽  
Person With Dementia ◽  
At Home

A caregiver support group was initiated at the Schizophrenia Research Foundation, Chennai, India. The study aimed to evaluate this service for 100 caregivers of persons with dementia, identify the needs met and explore the facilitating factors and barriers for participation. The support group met the information, emotional and counselling needs of caregivers. Trust between members was a key facilitating factor. Lack of help at home to support the person with dementia, distance from the venue and work commitments were barriers to caregiver participation. The study found that support groups fulfil an important need for caregivers by providing information and peer support.

scholarly journals Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs?

2018 ◽  
Vol 25 (9) ◽  
pp. 1130-1136 ◽  
Author(s):  
Esther M Friedman ◽  
Thomas E Trail ◽  
Christine Anne Vaughan ◽  
Terri Tanielian
Keyword(s):  
Family Caregivers ◽  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Online Community ◽  
Community Support ◽  
Care Recipient ◽  
Online Support ◽  
Care Needs ◽  
Logistic Regression Models

Abstract Background Online peer support groups are an increasingly common venue for caregivers supporting disabled family members to exchange informational, emotional, and instrumental support. We know very little, however, about who uses these groups and whether they are reaching those with the greatest needs. Objective To examine whether caregiving factors (ie, caregiving demands and strain, competing demands, access to support and services, and other caregiving characteristics) are related to online community support use and intensity of use. Method This study used data from a new survey of family caregivers who provide care to disabled military veterans. We used logistic regression models to examine the likelihood of online community support group usage and intensity of use as a function of a variety of caregiving factors. Results Those with greater caregiving demands were more likely to use online peer support. Specifically, helping the care recipient with more activities was associated with a statistically significantly greater likelihood of visiting an online community support group. Caring for a veteran with a neurological or psychological condition, which, in prior work, suggests more complex care needs, was also positively and significantly related to visiting an online community support group. Hours of care and several other caregiving factors were related to intensity of use. Conclusions We show that family caregivers with the most caregiving demands are most engaged with online support communities. This suggests that online communities could be used to support the most vulnerable family caregivers. The implications of this work for online support systems are discussed.

scholarly journals Differences in assistive technology installed for people with dementia living at home who have wandering and safety risks

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Eleanor Curnow ◽  
Robert Rush ◽  
Sylwia Gorska ◽  
Kirsty Forsyth
Keyword(s):  
Assistive Technology ◽  
Selection Process ◽  
Living Situation ◽  
Caregiver Support ◽  
People With Dementia ◽  
Multiple Characteristics ◽  
Person Characteristics ◽  
Person With Dementia ◽  
The Impact ◽  
At Home

Abstract Background Assistive Technology for people with dementia living at home is not meeting their care needs. Reasons for this may be due to limited understanding of variation in multiple characteristics of people with dementia including their safety and wandering risks, and how these affect their assistive technology requirements. This study therefore aimed to explore the possibility of grouping people with dementia according to data describing multiple person characteristics. Then to investigate the relationships between these groupings and installed Assistive Technology interventions. Methods Partitioning Around Medoids cluster analysis was used to determine participant groupings based upon secondary data which described the person characteristics of 451 people with dementia with Assistive Technology needs. Relationships between installed Assistive Technology and participant groupings were then examined. Results Two robust clustering solutions were identified within the person characteristics data. Relationships between the clustering solutions and installed Assistive Technology data indicate the utility of this method for exploring the impact of multiple characteristics on Assistive technology installations. Living situation and caregiver support influence installation of assistive technology more strongly than level of risk or cognitive impairment. People with dementia living alone received different AT from those living with others. Conclusions Results suggest that caregiver support and the living situation of the person with dementia influence the type and frequency of installed Assistive Technology. Reasons for this include the needs of the caregiver themselves, the caregiver view of the participants’ needs, caregiver response to alerts, and the caregiver contribution to the assistive technology assessment and selection process. Selection processes should be refined to account for the needs and views of both caregivers and people with dementia. This will require additional assessor training, and the development of validated assessments for people with dementia who have additional impairments. Policies should support the development of services which provide a wider range of AT to facilitate interventions which are focused on the needs of the person with dementia.

Abstract P851: Embracing Virtual Connection: An Innovative Systemwide Approach to Support Groups

Stroke ◽  
2021 ◽  
Vol 52 (Suppl_1) ◽  
Author(s):  
Carly J Rossi ◽  
Nicole Westensee ◽  
Dienst Elizabeth ◽  
Danielle Hagedorn ◽  
Julie Schafer ◽  
...  
Keyword(s):  
Support Groups ◽  
Support Group ◽  
High Risk Patient ◽  
Stroke Survivors ◽  
Group Leaders ◽  
Caregiver Support ◽  
Stroke Population ◽  
Virtual Platform ◽  
Problem Solve ◽  
Virtual Support

Background: Following a statewide stay-at-home order, Centura Stroke Support Group meetings were postponed indefinitely due to our high-risk patient population. Throughout the organization, stroke coordinators and support group leaders recognized the importance of community and continued support for the stroke population. The objective was to develop a creative survivor & caregiver support offering following social distancing guidelines given the Covid-19 restrictions, while collaborating & expanding opportunities for stroke support across the Centura system. Purpose: We hypothesized that we could successfully support stroke survivors & caregivers through a virtual platform during the pandemic & improve accessibility regardless of participant location or transportation. Methods: Group leaders assessed stroke survivors & caregivers ongoing needs through weekly outreach identifying the importance of the support group and a need for continued group access during the Covid-19 pandemic. Attendee’s indicated an interest in virtual support & a willingness to learn the required virtual platform. Leaders collaborated across the system to organize efforts in reaching survivors & caregivers at each hospital while sharing group curriculum & education systemwide; thus, allowing groups to meet at different times and increasing overall accessibility. Facilitators worked with individuals to problem solve potential issues navigating a virtual format. Results: The virtual format successfully provided support from the comfort & safety of home. Attendance increased in comparison to an in-person format. When asked about preference for an in-person setting only vs. a combination of in-person & virtual format, 80% selected a combination format. Working together across the system, stroke coordinators & group facilitators benefitted from a broader range of resources and connected the greater stroke community across Colorado. Conclusion: Regardless of future restrictions, hospitals should consider virtual support groups to increase accessibility for survivors & caregivers. There are benefits of the virtual platform which expand access to support by reducing barriers such as community availability and transportation.

Leveraging Facebook as a Peer-Support Group for Students

2014 ◽  
pp. 195-212
Author(s):  
Joni Salminen
Keyword(s):  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Social Issues ◽  
Drop Out ◽  
The Internet ◽  
Technology Barriers ◽  
Peer Support Group ◽  
Teacher Needs ◽  
User Friendly

This chapter reports the use of Facebook in a Digital Marketing course in a Finnish university as a peer-support group for a course consisting of 80 marketing students. It identifies seven types of student-/teacher-generated content: (1) course-related posts, (2) substance-related posts, (3) course feedback, (4) course recommendations, (5) event posts, (6) job posts, and (7) business-related posts. It also discusses educators’ problems of using social media as a course support. For example, there is a risk of artificial communication if participation is required but motivation for posting is purely extrinsic. Commercial social networks may be useful in education because they are user-friendly, easy to adopt, and involve less friction than systems isolated from students’ day-to-day usage of the Internet. Peer support frees teachers’ time, but it needs to be devised correctly for students to participate. In practice, the teacher needs to invest time and effort in providing interesting content and guidance. More than technology, barriers of peer support relate to social issues and expertise – the students must differ in their substantive knowledge so that peer support is possible, and students must feel comfortable to ask for and provide help. Interestingly, the drop out of students in the group can be kept low even after the course by posting interesting content. In this sense, the group may demonstrate stronger ties than peer support groups that dissolve after the course.

scholarly journals GIVE A PIECE OF YOUR MIND: A CONTENT ANALYSIS OF A FACEBOOK SUPPORT GROUP FOR DEMENTIA CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S850-S850
Author(s):  
Jenny A Lagervall ◽  
Madeline R Lag ◽  
Sophie Brickman ◽  
Rebecca E Ingram ◽  
Leilani Feliciano
Keyword(s):  
Support Groups ◽  
Caregiver Burden ◽  
Support Group ◽  
Coping Strategy ◽  
Online Support ◽  
Online Support Groups ◽  
Dementia Caregivers ◽  
Caregiver Support ◽  
Emotional Tone ◽  
Grief Reactions

Abstract The online environment offers individuals a means of obtaining information, support, and social connection. Older adults are growing users of the internet1. Online support groups (e.g., Facebook groups) have been found to provide health-related information and encourage mental well-being2. They may be particularly advantageous for caregivers of individuals diagnosed with dementia, as it is difficult to leave loved ones with dementia alone. However, the mechanisms by which online support groups engage caregivers, and the content of support, have yet to be explored. In the current study, content from 100 posts from a private Facebook caregiver support group were evaluated for gender of post author, relationship to the person receiving care, distress, emotional tone, grief reaction, caregiver burden, and coping strategy. Results indicated that caregiver distress was associated with the presence of grief reactions, negative emotional tone, and higher caregiver burden. Utilizing venting as a coping strategy was associated with higher caregiver burden, similar to what is observed in a traditional in-person support group. Online communication for caregivers may provide an indication of caregivers’ psychological well-being, as specific coping strategies and grief reactions indicated higher levels of caregiver burden and distress. Research on interventions for dementia caregivers may benefit from a focus on online social support as a means of accessing caregivers and treatment delivery.

scholarly journals Use of a multiparty web based videoconference support group for family caregivers: Innovative practice

Dementia ◽  
2014 ◽  
Vol 14 (5) ◽  
pp. 682-690 ◽  
Author(s):  
Mary Guerriero Austrom ◽  
Kristin N Geros ◽  
Kimberly Hemmerlein ◽  
Siobhan M McGuire ◽  
Sujuan Gao ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Support Group ◽  
Web Based ◽  
Innovative Practice

scholarly journals The Use of Web-Based Support Groups Versus Usual Quit-Smoking Care for Men and Women Aged 21-59 Years: Protocol for a Randomized Controlled Trial (Preprint)

2019 ◽  
Author(s):  
Cornelia Ann Pechmann ◽  
Douglas Calder ◽  
Connor Phillips ◽  
Kevin Delucchi ◽  
Judith J Prochaska
Keyword(s):  
Randomized Controlled Trial ◽  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Controlled Trial ◽  
Web Based ◽  
Randomized Controlled ◽  
Quit Smoking ◽  
Quitting Smoking

BACKGROUND Existing smoking cessation treatments are challenged by low engagement and high relapse rates, suggesting the need for more innovative, accessible, and interactive treatment strategies. Twitter is a Web-based platform that allows people to communicate with each other throughout the day using their phone. OBJECTIVE This study aims to leverage the social media platform of Twitter for fostering peer-to-peer support to decrease relapse with quitting smoking. Furthermore, the study will compare the effects of coed versus women-only groups on women’s success with quitting smoking. METHODS The study design is a Web-based, three-arm randomized controlled trial with two treatment arms (a coed or women-only Twitter support group) and a control arm. Participants are recruited online and are randomized to one of the conditions. All participants will receive 8 weeks of combination nicotine replacement therapy (patches plus their choice of gum or lozenges), serial emails with links to Smokefree.gov quit guides, and instructions to record their quit date online (and to quit smoking on that date) on a date falling within a week of initiation of the study. Participants randomized to a treatment arm are placed in a fully automated Twitter support group (coed or women-only), paired with a buddy (matched on age, gender, location, and education), and encouraged to communicate with the group and buddy via daily tweeted discussion topics and daily automated feedback texts (a positive tweet if they tweet and an encouraging tweet if they miss tweeting). Recruited online from across the continental United States, the sample consists of 215 male and 745 female current cigarette smokers wanting to quit, aged between 21 and 59 years. Self-assessed follow-up surveys are completed online at 1, 3, and 6 months after the date they selected to quit smoking, with salivary cotinine validation at 3 and 6 months. The primary outcome is sustained biochemically confirmed abstinence at the 6-month follow-up. RESULTS From November 2016 to September 2018, 960 participants in 36 groups were recruited for the randomized controlled trial, in addition to 20 participants in an initial pilot group. Data analysis will commence soon for the randomized controlled trial based on data from 896 of the 960 participants (93.3%), with 56 participants lost to follow-up and 8 dropouts. CONCLUSIONS This study combines the mobile platform of Twitter with a support group for quitting smoking. Findings will inform the efficacy of virtual peer-to-peer support groups for quitting smoking and potentially elucidate gender differences in quit rates found in prior research. CLINICALTRIAL ClinicalTrials.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028

Abstract TP403: Caring for the Caregiver After Stroke

Stroke ◽  
2020 ◽  
Vol 51 (Suppl_1) ◽  
Author(s):  
Laurel Packard ◽  
Tricia Tubergen ◽  
Jamie DuVerneay ◽  
Adrienne Veenstra ◽  
Muhib Khan
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Mental Health Problems ◽  
Emotional Adjustment ◽  
Stroke Survivor ◽  
Respite Care ◽  
Physical And Mental Health ◽  
Caregiver Support ◽  
New Normal ◽  
Long Term Study

Background: After diagnosis of a chronic progressive condition or emergent neurologic event, the focus is on the survivor and his/her adaptation to a ‘new normal’. Often these survivors or neurologic disease/injury require physical or emotional support and supervision from a caregiver. Research tells us that the act of caregiving is stressful, and often leads to physical and mental health problems for the caregiver1. Caregivers are often forced to adjust to a ‘new normal’ themselves, and verbalize feelings of loss associated with the relationship with the person they are caring for and indicate an inability to engage in tasks that they enjoy2. Studies also indicate that support often helps caregivers identify the positive attributes to caregiving, and that community recognition/support leads to positive coping behaviors3. Purpose: The purpose is to inform the audience of the novel Stroke Caregiver Support Group with respite care provided in Grand Rapids, MI. Methods: An analysis of feedback from stroke caregivers attending this support group was conducted. Within this analysis, meaningful support group topics and respite care services were described, with analysis of how these topics benefitted the caregiver and the adjustment to life caring for a stroke survivor. Results: Stroke caregivers appreciate a caregiver only support group as a venue to share difficult feelings with peers and promote self-reflection. All participants indicated a strong desire to continue to attend this support group and appreciate focus topics on finances and emotional adjustment after stroke. Conclusions: There are few caregiver-only support groups available for those caring for a loved one after a stroke. Although many diagnosis specific survivor support groups (stroke, TBI, Alzheimer’s, etc.) exist, few target the caregiver and offer a time for respite and support with a professional moderator. A care-giver only stroke support group has shown positive anecdotal value. Long-term study on any health-related benefits and qualitative impact is recommended.

scholarly journals Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
H. Roeline W. Pasman ◽  
Cécile R. L. Boot ◽  
Susanne M. van Hooft ◽  
AnneLoes van Staa ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Support Needs ◽  
Methodological Study ◽  
Caregiver Support ◽  
At Home

scholarly journals The Use of Web-Based Support Groups Versus Usual Quit-Smoking Care for Men and Women Aged 21-59 Years: Protocol for a Randomized Controlled Trial

10.2196/16417 ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. e16417
Author(s):  
Cornelia Ann Pechmann ◽  
Douglas Calder ◽  
Connor Phillips ◽  
Kevin Delucchi ◽  
Judith J Prochaska
Keyword(s):  
Randomized Controlled Trial ◽  
Peer Support ◽  
Support Groups ◽  
Support Group ◽  
Controlled Trial ◽  
Web Based ◽  
Randomized Controlled ◽  
Quit Smoking ◽  
Quitting Smoking

Background Existing smoking cessation treatments are challenged by low engagement and high relapse rates, suggesting the need for more innovative, accessible, and interactive treatment strategies. Twitter is a Web-based platform that allows people to communicate with each other throughout the day using their phone. Objective This study aims to leverage the social media platform of Twitter for fostering peer-to-peer support to decrease relapse with quitting smoking. Furthermore, the study will compare the effects of coed versus women-only groups on women’s success with quitting smoking. Methods The study design is a Web-based, three-arm randomized controlled trial with two treatment arms (a coed or women-only Twitter support group) and a control arm. Participants are recruited online and are randomized to one of the conditions. All participants will receive 8 weeks of combination nicotine replacement therapy (patches plus their choice of gum or lozenges), serial emails with links to Smokefree.gov quit guides, and instructions to record their quit date online (and to quit smoking on that date) on a date falling within a week of initiation of the study. Participants randomized to a treatment arm are placed in a fully automated Twitter support group (coed or women-only), paired with a buddy (matched on age, gender, location, and education), and encouraged to communicate with the group and buddy via daily tweeted discussion topics and daily automated feedback texts (a positive tweet if they tweet and an encouraging tweet if they miss tweeting). Recruited online from across the continental United States, the sample consists of 215 male and 745 female current cigarette smokers wanting to quit, aged between 21 and 59 years. Self-assessed follow-up surveys are completed online at 1, 3, and 6 months after the date they selected to quit smoking, with salivary cotinine validation at 3 and 6 months. The primary outcome is sustained biochemically confirmed abstinence at the 6-month follow-up. Results From November 2016 to September 2018, 960 participants in 36 groups were recruited for the randomized controlled trial, in addition to 20 participants in an initial pilot group. Data analysis will commence soon for the randomized controlled trial based on data from 896 of the 960 participants (93.3%), with 56 participants lost to follow-up and 8 dropouts. Conclusions This study combines the mobile platform of Twitter with a support group for quitting smoking. Findings will inform the efficacy of virtual peer-to-peer support groups for quitting smoking and potentially elucidate gender differences in quit rates found in prior research. Trial Registration ClinicalTrials.gov NCT02823028; https://clinicaltrials.gov/ct2/show/NCT02823028 International Registered Report Identifier (IRRID) DERR1-10.2196/16417

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