Overcoming Isolation: Creation of an Online Peer Support Group University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
Buchanan, M., Jones, B., Goralski, JL., Donaldson, S.H. Table 1: Support Group Topics Selected by Patients
Abstract Background: Infection Prevention and Control (IP&C) guidelines recommend the separation of all people with CF1. These guidelines prevent in-person support groups. An online support group was created to provide a place for our patients to meet and address feelings of loneliness and isolation. Methods: After establishing an interest from patients, a participant agreement was developed with UNC legal. The first online support group was offered in January 2018. The Blue Jeans videoconference platform was used. Results: A total of three groups have been completed since January 2018 that comprised a total of 10 unduplicated patients. Within this limited sample, we have observed improvements in feelings of isolation due to CF and comfort with technology. Discussion: Starting and maintaining support groups that adhere to infection control guidelines for CF is feasible. Patient feedback has been positive and suggests that support groups are effective at decreasing feelings of isolation and increasing comfort with technology.
Support Group Topics Selected by CF Patients Managing Daily Life Managing My Mood Affording Care Work/Careers
Transplant CFRD Dating/Relationships Starting a Family
Results, continued Pre-Survey: I feel connected to the CF Community
6 5 4 3 2 1 0
Results A total of 10 unduplicated patients have participated in three online support groups since January 2018. Pre- and post-survey data indicates improvements in connection with the CF community, isolation, and comfort with technology. Likert scale responses to the statement, “I feel connected to the CF community” are represented in the Figures 1 and 2, showing an improvement from 33% responses indicating they agree or strongly agree in the pre-survey to 70% of responses indicating they agree or strongly agree in the post-survey. A sample of free text responses provided by participants is provided below:
Strongly Agree
Agree
Neutral
Disagree
Strongly Disagree
Figure 1: Pre-Survey responses to “I feel connected to the CF community.”
Post Survey: I feel connected to the CF community 6 5 4 3 2 1 0 Strongly Agree
Agree
Neutral
Disagree
Strongly Disagree
Figure 2: Post Survey responses to “I feel connected to the CF community.”
Background In accordance with new CF mental health guidelines, the UNC Adult CF team performs universal screening for anxiety and depression and offers individual therapy for those with positive screens. Through this process, we have identified feelings of isolation and loneliness as being important and common themes. Due to infection control guidelines, patients with CF can not participate in traditional, in-person support groups. In order to address feelings of isolation and loneliness and still abide by infection control guidelines, an online support group was established utilizing the BlueJeans platform through the CF Foundation.
Methods Patient interest was established using a survey sent via email to all Adult UNC CF patients, with 87.5% of respondents expressing an interest in an on-line support group. The survey included questions about preferences related to time of day, open versus closed groups, and topics. After establishing an interest, a participant agreement was developed with the UNC Legal Dept and we worked with the CF Foundation to access the BlueJeans videoconferencing platform. The first online group began meeting in January 2018 and was comprised of patients who were already working with a CF Center LCSW in individual therapy. We have now completed three 8-week, closed, online groups. The CF team has advertised the support group in a quarterly newsletter and continues to inform patients during the mental health screening process and individual therapy. Topics that have been selected by the different groups are listed in Table 1.
I’ve had a huge breakthrough with being able to speak about CF. Having others to talk to helped so much.
I did not feel as crazy for feeling the way I did.
I ended the support group … with a sense of strength that I really needed at this point. I would recommend prioritizing the hour a week … and joining one of the support groups.
Discussion The implementation of CF mental health guidelines at the UNC CF Center has allowed opportunities to further build rapport with patients and facilitate conversations around specific symptoms, including feelings of loneliness and isolation. Although we are early in the process, development of this resource and responses from participants suggest that the group is able to help patients develop wider support systems that include CF patients, while maintaining contact precautions. Ideas for the future include population-specific groups, such as a men’s group or young adult group, and the possible addition of a peer- led group or an open group. Areas for improvement include being able to offer support groups to more of our patients.
References 1. Saiman, L., Siegel, J., LiPuma, J., Brown, R., Bryson, E., Chambers, M., . . . Weber, D. (2014). Infection Prevention and Control Guideline for Cystic Fibrosis: 2013 Update. Infection Control and Hospital Epidemiology, 35(S1), S1-S67. doi:10.1086/676882
This study was supported by CF Foundation Mental Health Grant (CMHC076)