Sickle Cell Virtual Support Group Program for Adults: An Implementation Evaluation

Abstract

Sickle cell disease (SCD) is associated with medical and psychosocial challenges. SCD in adulthood is characterized by increased morbidity and mortality, vulnerability, inadequate self-management preparation, and limited social support. This study evaluated the implementation of a virtual support group during the COVID-19 pandemic using an intervention parameters framework evaluation. Participants included six adults living with SCD. Content analysis was conducted for each of the six intervention parameters, and satisfaction scores were summarized. Participants positively evaluated all intervention parameters of the virtual support group. Findings confirmed that a community-engaged intervention supports self-management and establishes key social networks for adult participants.

Sickle cell disease (SCD) is an inherited blood disorder that in the United States is most common among African Americans and impacts millions of people globally (American Society of Hematology, 2022). SCD affects all body systems and causes a range of physical complications such as infertility, impaired vision, vaso-occlusive pain crises, chronic hemolytic anemia, infections, organ damage, stroke, and life-threatening multiorgan failure (Bender, 2003; Change for SCD, n.d.). Individuals living with SCD may experience behavioral and psychosocial responses including health-related stigma, anxiety, depression, spiritual distress, and isolation (Bulgin et al., 2018; Clayton-Jones, Matthie et al., 2021; Osunkwo et al. 2021). Living with SCD affects all dimensions of health and can significantly impact overall well-being and quality of life engendering increased needs for psychosocial support (Desine et al., 2021; Osunkwo et al. 2021).

Support groups are one way to address the psychosocial challenges of living with a chronic illness (Doull et al., 2017) or provide a social network for adults to help them cope with the stress associated with living with SCD (Centers for Disease Control & Prevention, 2022). Benefits of participating in a support group for adults living with chronic conditions have included increased understanding of disease knowledge and management, improved access to information, and giving and receiving social support (Cooper et al., 2021; Giri et al., 2021; Judd-Glossy et al., 2022). Attendees of support groups for adolescents and adults living with SCD reported experiencing less pain (McClendon, 2001) and fewer symptoms as a result of support group participation (Telfair & Gardner, 1999).

Engagement of participants in the development of supportive interventions has been recommended to ensure relevance, acceptance, effectiveness of the interventions and to advance health equity (Wallerstein, 2020; Wallerstein & Duran, 2010). For example, in a study conducted with adolescent and young adult (AYA) cancer survivors, researchers identified that attendance improved when AYA were involved and their input was incorporated into the support group design (Fox et al., 2021). The impact of SCD and need for support can be more evident during the period of young adulthood as expectations increase for more independent self-management of health conditions, navigation of healthcare systems, and meeting other responsibilities of adult life (Hsu et al., 2016; Matthie et al., 2016; Treadwell et al., 2011; Varty & Popejoy, 2020).

Stigma toward mental illness is persistent (Alang, 2019), and African Americans living with SCD are particularly vulnerable to mental illness stigma (Bulgin et al., 2023). This results in barriers to their access to care (Alang, 2019) and consistent support (Lanfredi et al., 2019). Community-engaged approaches facilitate partnerships with underrepresented populations (Collins et al. 2018), and support development of participant-centered interventions to increase equity of access and empowerment of those participating (Alang, 2019). This allows for community preferences for interventions and cultural relevance to be supported.

In a previous long-term project to improve the lives, health, and mental well-being of African American adults living with SCD, we used a community-engaged approach to develop and evaluate a culturally relevant support group intervention. This approach engaged adults from the local SCD community, and an interdisciplinary research team of university students and faculty to learn, recognize, and improve support group services together. The development of the support group has been previously reported (Clayton-Jones et al., 2020), and recommendations from focus group participants for modifications of the support group intervention program were applied to the current project prior to implementation. Support for mental well-being that is community engaged (Alang, 2019) and culturally relevant (Willis & Neblett, 2023) could alleviate some of the barriers experienced by adults living with SCD.

Assessments of intervention parameters for virtual support groups are needed to determine their value in the post-pandemic era (Ye et al., 2022). In the current paper, we describe the evaluation of the virtual support group for adults living with SCD that used a synchronous virtual session format to make the support group accessible while adhering to pandemic global health safety measures (Suresh et al., 2021). The purpose of this paper was to describe the necessity, acceptability, feasibility, safety, fidelity, and effectiveness of our virtual support group intervention for adults living with SCD.

Methods

Research design

This study used an evaluation design following the intervention parameters framework proposed by Zauszniewski et al. (2018). This framework is used to assess a new intervention prior to further development, refinement, and testing in larger clinical trials (Zauszniewski, 2012). Importantly, the parameters of necessity, acceptability, feasibility, safety, fidelity, and effectiveness are assessed from the participants’ points of view, promoting engagement of these key stakeholders in development and refinement of interventions that are designed to impact them.

Necessity of the sickle cell virtual support group

The necessity parameter refers to whether individuals believe that they and others need the intervention (Bekhet, 2017; Bekhet & Nakhla, 2019; Zauszniewski et al., 2018). It is important to assess the necessity parameter from the participants’ perspectives as previous research showed a discrepancy, in some cases between the perspectives of care providers and care recipients (Zauszniewski, 2012).

Acceptability of the sickle cell virtual support group

The acceptability parameter refers to whether the participants believe that an intervention is appropriate for them. This includes understanding the least and the most interesting parts of the intervention (Bekhet, 2017; Zauszniewski, 2012).

Feasibility of the sickle cell virtual support group

The feasibility parameter refers to whether the participants believe that the program is manageable and practical for them. This includes the time commitment involved in recruitment, enrollment, and retention and the challenges associated with the intervention (Bekhet, 2017; Zauszniewski et al., 2018; Zauszniewski, 2012).

Safety of the sickle cell virtual support group

The safety parameter assesses whether the participants experienced discomfort or distress during or as a result of the intervention (Zauszniewski et al., 2018; Zauszniewski, 2012). This is a highly important parameter to examine given the continuous emphasis by Institutional Review Boards regarding the physical and psychological safety of people participating in intervention studies and clinical trials (Zauszniewski et al., 2018).

Fidelity of the sickle cell virtual support group

The fidelity parameter is defined as a competent delivery of the program in accordance with the prescribed protocol as outlined by the researchers. This also includes whether individuals experience the desired gain or change as a result of participating in the intervention (Bekhet, 2017; Zauszniewski et al., 2018; Zauszniewski, 2012).

Effectiveness of the sickle cell virtual support group

The effectiveness parameter is used to evaluate from the perspectives of individuals who participate in the intervention. They are asked what might have helped them to learn the intervention better (Bekhet, 2017; Zauszniewski et al., 2018; Zauszniewski, 2012). Each intervention parameter assessment is critical to developing effective interventions that populations are willing, and able, to partake in.

Participants and recruitment

Eligibility for participants included: (a) self-reported diagnosis of SCD, (b) able to speak, understand, and read English, (c) between the ages of 18 and 40 years of age, and (d) have internet access. The age range was suggested by the sickle cell community in earlier phases of development of the support groups. The broad age range allowed for mutual learning from each other’s experiences. A recruitment flyer was shared with local African American community through a comprehensive sickle cell clinic for adults, community organizations, and faith-based organizations. One of the researchers met with potential participants to discuss participation. Eight adults were screened for participation, all were eligible, and all consented to participation. Subsequently, one participant dropped out due to scheduling, and one participant did not attend any sessions. Six adults participated in the virtual support group. Institutional Review Board study approval was received prior to beginning the study.

Description of the intervention

Planning of the virtual support group began in our previous study, where adults living with SCD participated in focus group interviews to inform the design, conduct, and evaluation of an in-person support group (Clayton-Jones et al., 2020). A small group format of six to 10 participants was recommended by the participants in our previous study. The virtual support group intervention used in this study consisted of a one 90-minute meeting via Microsoft Teams that was scheduled weekly for 6 weeks. Prior to the first session, a practice Teams session was scheduled with the participants to ensure they downloaded the application prior to the first support group session. Reminders were sent the day before and the day of via email and text messaging.

Each support group session was led by two facilitators experienced in leading group-based programs; one for content delivery and the other for group activity delivery. Facilitators were community and academic members of the research team who were recommended by individuals living with SCD, nursing and counseling faculty who had experience working with the SCD or marginalized populations, and community members. For example, the principal investigator is an expert in caring for individuals living with sickle cell disease and reviewed medical content prior to the support group sessions. Facilitators had the autonomy to structure their presentation and the format of their activity sessions.

Topics for each meeting were selected and prioritized by adults living with SCD in our previous study and included vocational/career, coping, emergency department (ED) encounters, medications, nutrition, and health insurance (Clayton-Jones et al., 2020). The meeting format included time for engaging participants with topic content (see Table 1) and for participants to pose questions. Each session lasted approximately 120 min: 15 min for an ice breaker, 30 min on content, 15 min for discussion, a 10-minute break, and a 45-min activity related to the topic (see Table 2). Activities were also identified in our previous and included game nights, chef night, relaxation yoga night, vision board night, and art therapy night. Cultural relevance was reviewed and tailored to the preferences of what the participants shared in our previous study. For example, game night included African American history trivia. Art therapy night included an activity to promote healthy self-identity to include cultural identity (race, gender, religion, etc.). Materials needed for the activities were mailed to the participants in advance of sessions. For example, yoga mats were mailed for relaxation night. Resource links were emailed to participants. A resource list of 17 mental health providers throughout the community was created and shared with all the participants, and the principal investigator offered to provide assistance if referral was needed.

Table 1. Examples of content presented in support group meetings.

Content topic	Role of presenter	Talking points and resources
Career planning	Licensed Professional Counselor	Career and college resource information
Public & private health insurances	Human Resource Professional	Differences between insurances
SCD medications	Pharmacist	Pain medications and new drug therapies
ED advocacy	ED Registered Nurse	ED experiences and reflective action
Coping strategies	Mental Health Nurse	Positive thinking skills
SCD specific nutrition	Experienced Dietician	Food nutrients, water intake, and role in SCD

Table 2. Examples of group activities.

Activity	Supplies	Resources
Digital Vision Boards	Mobile device or laptop	Windows Movie Maker
Trivia	Mobile device	Kahoot activities developed around Black history and sickle cell physiology and self-care topics
Health promotion Bingo	Bingo cards, prizes	Active & Healthy Bingo Challenge https://www.nimhd.nih.gov/programs/edu-training/nmhm/bingo/index.html Online bingo
Art therapy	Colored pencils and post card paper	Participants were guided through an art activity
Gentle yoga	Yoga mat	Adaptive activities that can be done at home
Chef night (meal planning)	Demonstrated healthy meal prepping and cooking	Websites for preparing healthy crockpot meals

Evaluation measures

Two surveys were created to gather evaluation data, including a qualitative survey regarding intervention parameters and satisfaction, and quantitative satisfaction surveys. Two members of the sickle cell community served as content reviewers for both surveys.

The participants were asked to complete an online satisfaction questionnaire weekly. Satisfaction was included as a measure of acceptability.

A 5-point Likert scale satisfaction questionnaire (1 = very dissatisfied to 5 = strongly satisfied) was created to measure the participants’ overall satisfaction and satisfaction specific to the facilitators, the session content, the activity facilitators, and the activity content. After the last of the virtual support group sessions, the participants completed an evaluation survey administered through the Qualtrics online survey platform. Using the survey, we requested narrative responses to specific open-ended questions about each of the six intervention parameters (necessity, acceptability, feasibility, safety, fidelity, and effectiveness). The list of the survey questions for each parameter is presented in Table 3.

Table 3. The support group intervention parameter questions (open-ended) (Bekhet & Nakhla, 2019; Zauszniewski, 2012).

	Question	Parameter type
1	Do you think you needed the sickle cell virtual support group? Explain why.	necessity
2	Do you think other adults living with sickle cell disease need this program? Explain why.	necessity
3	What part(s) of the program/sessions were most interesting?	acceptability
4	What part(s) of the program/sessions were least interesting?	acceptability
5	What part(s) of the program/sessions were the easiest?	feasibility
6	What part(s) of the program/sessions were the most challenging?	feasibility
7	Do you think that the number and length of program/sessions were appropriate in terms of time commitment?	feasibility
8	Were you able to learn all parts of the program?	fidelity
9	What would have helped you to learn it better?	effectiveness
10	What part(s) of the program were least and/or most distressing or uncomfortable?	safety
11	Do you have any concerns that you would like to share?	safety

Data analysis

Qualitative content analysis, an acceptable analysis method for short open-ended questions (Krippendorf, 2018), was used to analyze the results related to each intervention parameter. Data were analyzed by reading the responses, organizing the data, identifying the themes in each participant’s response, and determine the congruent patterns across participants Graneheim & Lundman, 2004). Two researchers independently organized data to ensure credibility and trustworthiness of the findings, then met and compared the findings until consensus was achieved (Carpenter et al., 2011; Glaser, 1992; Struebert & Carpenter, 1999).

Saturation is an important criterion in qualitative research. However, it is not a requirement and is not suited for all qualitative research studies (Vasileiou et al., 2018). In this study, we did not use saturation as criteria for participant size. Rationale was based on preferences of previous focus groups to have six in a support group, with 10 being the maximum (Clayton-Jones et al., 2020). Six was used for this feasibility study. We did address the small participant size as a limitation in our discussion.

Results

The participants were six adults living with SCD from the Midwest region of the United States. Due to the small SCD community in the region, the reports of the demographic characteristics were kept general to maintain their privacy. Two participants were in their twenties and four in their thirties. Four participants identified as female. Five participants were African American, and one identified as African. Five participants had HbSS type, and one person had HbSC type of SCD. Five of the six participants completed the online survey specific for the intervention parameters at the end of the support group sessions.

Intervention

Necessity of the sickle cell virtual support group

Five participants evaluated need for an SCD virtual support group. Four indicated that they needed the support group program. Examples of the participants’ responses included: “Yes because it was a way to gain more information and perhaps be a voice in the community,”

Yes, I have never been a part of a support group therefore, I never really expressed my experiences and feelings towards sickle cell. This support group served as an outlet for me and gave me a chance to learn things that could aid in my mental and physical wellbeing,” and “At first, I didn’t think I needed it, but then I came to find out that I really did enjoy the group and got to discuss with more adults that have sickle cell like I do.” The fifth participant said, “Not exactly needed but glad to be a part of it for sure.”

The participants identified that they needed the support group for personal interaction, to be and feel heard, and to gain knowledge. In the support group, they valued making safe, comfortable, and supportive connections with their peers. They did not routinely interact with other adults with SCD, and they highly valued getting to know others with similar experiences. They also did not have enough opportunities to talk about SCD in their everyday lives, and they were glad to have a space to share and express themselves. Lastly, they gained knowledge in self-management strategies. The participants indicated that they valued the informative and educational content that was shared.

All five participants believed that other adults living with SCD need this program. One participant indicated, “Yes, because the program offers useful information to help a Sickle Cell person.” Another participant shared their experience saying, “Yes, it is very helpful to have this program because it allows adults to gain connections and new knowledge when it comes to being proactive in managing their health and learning to cope with sickle cell. It also gives the opportunity for adults to ask questions freely and gives a comfortable environment to discuss uncomfortable experiences.” Another participant shared their point of view stating, “They could definitely use this, so they know they’re not alone.”

Acceptability of the sickle cell virtual support group

The participants’ overall satisfaction was above average, ranging from 4.25–5.0, with a total mean of 4.65. Session 3 was rated the lowest (M = 4.25) overall. The participants expressed gratitude for the facilitators and rated their satisfaction with them highly (M = 4.88). The participants reported that strengths of the support group were the psychosocial activities, gaining knowledge from experts, and social support. The detailed satisfaction ratings are presented in Table 4.

Table 4. Virtual support group sessions and satisfaction (Likert scale).

Area of satisfaction	Session mean (SD)
	Session 1 (n = 5)	Session 2 (n = 5)	Session 3 (n = 4)	Session 4 (n = 6)	Session 5 (n = 6)	Session 6 (n = 5)	Total mean (SD)
Overall	4.60 (.89)	4.60 (.89)	4.25 (.96)	5 (0)	4.50 (.84)	4.8 (.45)	4.65 (.71)
Education topic	Career & college resources	Insurance & benefits	Medication management	ER advocacy	Coping strategies	Nutrition
Facilitator	4.60 (.55)	4.60 (.89)	4.25 (.96)	5 (0)	4.83 (.41)	5 (0)	4.74 (.59)
Session content	4.40 (.89)	4.60 (.89)	4.5 (1)	5 (0)	4.50 (.84)	5 (0)	4.73 (.67)
Activity topic	Bingo night	Vision board night	SCD trivia night	Art therapy night	Yoga night	Chef/meal plan night
Activity facilitator	5 (0)	5 (0)	5 (0)	5 (0)	4.83 (.41)	4.60 (.89)	4.88 (.43)
Activity content	4.80 (.45)	5 (0)	5 (0)	5 (0)	4.67 (.52)	4.60 (.89)	4.85(.46)

The participants indicated that the different activities in sessions supported them in their coping and gaining knowledge (online vision board, ED plan of action, and art therapy), nutrition, and the various knowledge they gained were the most interesting (acceptable) parts of the program. One participant stated regarding the online vision board, “It gave me another way to see my goals and bring them to life.” For the ED plan of action, a participant shared, “It was good to hear how others coped with treatment in the ED and to gain pointers and insight from a nurse that works in the ED.” With regard to the art therapy session, one participant shared, “It was a great way to acknowledge and release my thoughts and feelings.” For the nutrition session, the participants were appreciative of the expertise of the facilitator. One participant shared, “I’m glad that you brought in a nutritionist because it was a lot that I didn’t know.” Another participant stated, “The information sessions were interesting to me because I always learned something every week that I thought I knew but I didn’t.” Yet another participant shared their opinion about general satisfaction and what was most enjoyable about the session saying, “Bringing guest speakers in to give more information about different areas of life.”

Four of the five participants indicated that they enjoyed the various aspects of the program, and nothing was least interesting. Examples of participants’ responses were: “I thought every part of the program was interesting,” “None,” “I enjoyed every session,” and “Career & College resources; I am already a college student and have already utilized the resources given. I did appreciate the tool to find out the incomes that were available for our career of choice in different areas.” The fifth participant indicated that “Yoga” was the least interesting aspect of the program. Cultural relevance was applicable to the acceptability of the session content and engaging activities. Being aware of cultural preferences was noted as being significant when making plans for a support group. This was significant in promoting meeting attendance and participant satisfaction. Having a community-based participatory approach was valued and suggested to continuously allow community input to inform intervention development and ensure acceptability.

Feasibility of the sickle cell virtual support group

Five participants completed the six sessions of the sickle cell virtual support group program. One participant completed five of the six sessions due to a work conflict. Five participants evaluated the program. Four participants indicated that the number and length of program/sessions were appropriate in terms of time commitment. One participant indicated that “Maybe two hours instead of 2.5.” They valued the flexibility of the program. The easiest part of the program as indicated by the participants was the different activities and the games. One participant stated, “Art Therapy, Online Vision Board, Yoga, and Game Night” when referencing favorite components of the virtual support group. Challenges reported by two participants included the yoga session. One participant stated that yoga was the most uncomfortable because she did not feel the practice was in alignment with her spiritual beliefs. The participant expressed greater comfort with using the term “relaxation and stretching” to describe the yoga activity. A second participant stated, “Yoga because of the problems of my illness.” This was in reference to a couple of the postures that were demonstrated and not “as comfortable” as the others. Two other participants indicated that there were no challenging parts of the sessions. One participant indicated that the online sessions were problematic sometimes; she stated, “The information part was not that challenging, but sometimes there would be a lot of echoing and it was hard to hear the information.”

Safety of the sickle cell virtual support group

There was no need for medical or psychological referral. All participants indicated that there were no concerns and that “everything was fine and well planned.” Two participants indicated that nothing was distressing or uncomfortable. While the yoga instructor was requested to adapt postures for those who may have mobility issues, further adaptation is warranted. This includes changing the session name and content to “relaxation and stretching” instead of yoga to avoid conflict with spiritual beliefs.

Fidelity of the sickle cell virtual support group

Fidelity was evaluated by asking the participants whether they believed that they were able to learn all parts of the program. Four participants indicated that they were able to learn all parts of the program, and one participant said, “No for the last 2 sessions I was late, so I missed about half of the information session but other than that I did learn all parts of the programs.” Another participant shared, “I did not know the calculations of drinking water at all. I drink more than I’m supposed to drink.” The participants were able to readily apply content learned in the support group sessions to their lives.

Effectiveness of the sickle cell virtual support group

The participants had several recommendations to improve effectiveness. They suggested that “guides of what presenters were going to talk about” would improve their learning. More interaction and interactive activities to get to know each other better were desired. The participants wanted activities to help them engage with each other to build supportive relationships that would continue after the support group was concluded. They emphasized the need to build in space for expression to allow time to engage in open discussion. This was especially significant for areas where they felt they would benefit from more knowledge or in discussing a session topic that was a greater challenge when managing their SCD.

Discussion

We used a community-engaged approach to bring together adults from the local SCD community, and an interdisciplinary research team of university students and faculty to learn, recognize, and improve support group services together. We assessed six intervention parameters, and our results support that our virtual support group intervention was necessary, acceptable, feasible, safe, and has promising fidelity and effectiveness for adults living with SCD.

Necessity of the virtual support group was expressed as the participants shared a need for connectedness in the virtual support group. Peer support and the members’ connectedness has been proven to be beneficial in promoting well-being, and the integration of peer support in mental health promotion has progressed steadily (Myrick & del Vecchio, 2016; Shalaby & Agyapong, 2020; White et al., 2020). The intervention parameters assessment of this study also highlighted the need to have personal interaction and to be heard. However, there has been a lack of research on how to effectively facilitate a synchronized virtual group. Suresh et al. (2021) suggested several strategies, such as how to communicate with the group members to provide a safe virtual space when facilitating the groups. This study added to the literature, based on the participants’ feedback, that an integration of longer interactive group activities can strengthen the group members’ personal interaction, a space to be heard from each other, and their well-being.

Acceptability of support group topics was evident as the participants in our support group were highly engaged with the session about ED self-advocacy strategies. Individuals living with SCD have been stigmatized in the health care system and the stigmatization has affected their quality of care (Evensen et al., 2016; Jenerette & Brewer, 2010; Renedo et al., 2019). Through sharing personal stories, people learn that they are not the cause of poor health care, and they are not alone. Health care providers and health care systems are responsible for the care they deliver. This support group session provided an opportunity for persons living with SCD to understand that they can demand the high-quality care they need and deserve.

Researchers have shown that disparity exists in the use of integrative health approaches including yoga, art therapy, mindfulness, and prayers, among youth from racial and ethnic minority backgrounds (Burrowes, 2019; Clayton-Jones, Ong et al., 2021; Gillam, 2018). For the current study, participants gave a high satisfaction rating for the art therapy support group activity. This was also an activity where there was an opportunity for them to embrace their cultural identity.

Mindfulness-based activities, such as yoga, have been effective in promoting positive psychological well-being. A participant in this study expressed conflicted opinions about the usefulness of yoga as it might not have aligned with the individual’s spiritual beliefs. Developing integrative frameworks that are inclusive of appropriate religious content may better support mindfulness in diverse settings (Nagy et al., 2022). To increase the access as discussed by Watson-Singleton et al. 2019, and acceptability of mindfulness-based activities, applying different modifications of culturally responsive mindfulness-based activities is recommended. For instance, a culturally modified mindfulness-based activity could utilize African American facilitators, incorporate cultural value, infuse culturally familiar terminology, and provide cultural resources.

Overall, the participants considered the support group to be feasible. The participants mentioned that they appreciated the flexibility of the program. However, we also received feedback that the length of some sessions could be longer or shorter. For example, the participants asserted that they would prefer to have a longer session for opportunities to have more group interactions and connect with support group members. Based on the format of the current study, addressing this preference would not require additional resources or costs to implement as the engagement activities were the least expensive to implement. The group facilitators could be flexible in supporting participants’ needs even if they have to modify the group facilitation protocol. As Marhefka et al. (2020) emphasized, the best practices for successful virtual group facilitation are creating meaningful interactions and being supportive of the participants’ basic and emotional needs.

Considering safety in the context of cultural safety is critical. While cultural preferences were considered and incorporated into the design of the current intervention, there was room for the intervention to be more culturally adapted when planning session content and activities. Promoting an environment of cultural safety can support intervention development with consideration of existing biases and unequal power dynamics (Shepherd et al., 2019). Further centering of the intervention within cultural values and beliefs can impact acceptance and participation, while advancing health equity (Willis & Neblett, 2023).

In considering ways to improve fidelity and ensure that participants experience the desired gain, one suggestion would be to offer age- and/or role-specific content, such as in the session about college and career content. The participants in their twenties wanted to spend more time discussing college opportunities and preparation. Those in their thirties wanted to spend more time discussing career development and options. Parenting is an example of a role that was not addressed in our support group. Tailoring activities to the needs/interest of the group was also identified. For example, one participant wanted a longer yoga session and one felt that their physical condition prevented them from doing yoga.

The effectiveness of a virtual support group on one’s ability to cope is important. Results of this study are consistent with previous research conducted with individuals living with SCD. Virtual support groups have the potential to alleviate some of the physical and psychosocial burden experienced by adults (Bouma et al., 2015; McClendon, 2001; Telfair & Gardner, 1999; Wan et al., 2021). Adults living with SCD faced many challenges during the COVID-19 pandemic to include isolation due to social distancing or fear of contracting the virus, and challenges in managing their SCD during the pandemic (Matthie et al., 2022). We pivoted to a virtual platform for the support group due to pandemic concerns. We discovered that the virtual platform worked well and should be considered as a viable option for future support groups.

There are a few limitations with regard to this study. The evaluation was limited to an online survey format for narrative responses, which may produce different results than in-person interactions. There was no opportunity for probing for more in-depth understanding of the participants’ responses. Regarding the themes from the short open-ended questions on the satisfaction survey, although two researchers were able to come to a consensus on the themes, we did not have a third party to audit the analysis. In addition, the only quantitative measure was the satisfaction survey (acceptability parameter). More robust measurement using a full mixed methods approach with convergent interpretation will be needed to understand the impact of support groups more comprehensively within short-term and long-term time frames. No health outcomes were included for evaluation for concurrent validity for the current study.

While most of the adults were seen in one adult clinic (n = 5), findings may not be generalizable to the larger population of adults living with SCD. We used a broad age range, and there may be more age-specific needs not addressed with this group. Differences in acceptability between groups based on age was not evaluated. Use of a larger group of participants from diverse settings would support generalizability of the findings. Results may not be generalizable to other age-specific populations as there are some experiences that are unique to the young adult, adult, and older adult populations. We also recognized that using an online platform could exclude individuals who have limited or no access to the internet.

Conclusion

This study evaluated critical intervention parameters of a virtual support group for African American adults living with SCD. Our findings demonstrate that a virtual support group intervention is necessary, acceptable, feasible, safe, and has promising fidelity and effectiveness for participants. This research represents the potential for the use of virtual peer support among individuals with chronic illness based on a community-engagement approach.

Acknowledgments

We would like to thank the sickle cell warriors and community members who participated with this research study.

Disclosure statement

The authors report there are no competing interests to declare.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

Financial support for this study was provided by the Marquette University College of Nursing Frenn Service Award, and the Marquette University Office of the Provost-Office of Community Engagement. Research assistance for data analysis and article development was supported by research funds from the Marquette University College of Nursing. This publication is funded by the Gordon and Betty Moore Foundation through Grant GBMF9048 to Dora Clayton-Jones.