Persons age ≥65 are the fastest growing demographic. Many older adults experience aging-related changes that predispose them to impaired functioning and health-related changes, as well as being at higher risk of social isolation (Alexopoulos, 2005; Roberts, Ogunwole, Blakeslee, & Rabe, 2018). Moreover, as aging-related changes are often compounded by chronic conditions, daily health management is often complex and involves adopting self-management behaviors beneficial to health (Gerber et al., 2011).
Although many approaches to facilitate health and symptom management exist, online technologies deserve further exploration given their dramatic uptake in usage among older adults. Currently, 80% of older adults who live in a household have a computer and >75% have internet access (Roberts et al., 2018). Virtual online communities, social units where members interact and relate over the internet, have become increasingly common for sharing personal self-management experiences and linking people who share similar health histories (Allen, Vassilev, Kennedy, & Rogers, 2016; Demiris, 2006; Swan, 2009). These groups can also provide important insights concerning patients' lived experiences (Chen, 2012a; Kingod, Cleal, Wahlberg, & Husted, 2017).
Online communities allow people to engage in conversations at their own convenience in terms of time of day and frequency (Blank & Adams-Blodnieks, 2007). Some online communities involve asynchronous communication, whereas others facilitate communication in real-time. Moreover, support from people with similar experiences can facilitate empathic and nonjudgmental conversations (Hughes et al., 2017). Online communities can also be used to engage patients for awareness-raising and support (Bender, Jimenez-Marroquin, & Jadad, 2011). Although it has been found that online communities can help empower older adults to manage disabilities and engage in productive activities (Siriaraya, Ang, & Bobrowicz, 2014), this rich and dynamic information source has remained relatively unexplored in the context of aging-related experiences such as frailty.
Frailty is a gerontological concept, referring to aging-related predisposition to loss of independence and reduced quality of life (Clegg, Young, Iliffe, Rikkert, & Rockwood, 2013). Frailty is an important target for interventions and has phenotypic manifestations of weakness, slowness, fatigue, weight change, and reduced activity (Fried et al., 2001). As frailty and other aging-related changes are interconnected, the ability to self-manage frailty might also improve one's overall aging experience.
Self-management is an important part of long-term health management, and in recent years, there has been increased interest in developing self-management interventions that improve health-related quality of life (Jonkman, Schuurmans, Groenwold, Hoes, & Trappenburg, 2016). However, although there is a significant body of literature on chronic illness self-management, how self-management patterns develop over the life course is yet unknown (Audulv, 2013).
In the current study, the authors endeavored to elicit knowledge about how older individuals adapt to their aging bodies over time and develop an environment where individuals can share and discuss their experiences of this process. This pilot study aimed to examine the feasibility of using a moderated platform to engage older adults in sharing their aging-related experiences and management strategies. A mixed-methods approach was used involving both consideration of participant enrollment and engagement and qualitative analysis of the content authored. The authors built upon a design that was used in a previous study involving a moderated discussion to facilitate sharing of experiences relating to body listening and body awareness (Chen, Kaplan, & Carriere, 2017). Similarly, the platform prioritizes the narratives of those engaged in the experience of body listening, so to better understand how people learn to listen and adapt to their bodies over time. This goal is congruent with the concept of Engaging With Aging (EWA) as defined by Carnevali, Primomo, and Belza (2019), which emphasizes that older adults develop adaptive strategies to address age-related changes.
A 10-week pilot study was conducted among older adults with frailty symptoms living in a retirement community in Seattle, Washington. To participate, the individual had to be 65 or older, have internet access, and demonstrate at least one frailty symptom, such as weight loss, fatigue, mobility limitation, and inactivity from the short Women's Health Initiative frailty measure, a brief four-item frailty screening instrument (Zaslavsky et al., 2017). The target group size was 10 older adults. Eligible participants were recruited and enrolled in-person.
The current study was modeled after the Body Listening Project, a social platform that involved a moderated 10-week discussion for individuals to share their experiences with body listening (Chen et al., 2017). In the current study, participants were encouraged to share their aging-related experiences and management strategies with others by engaging in weekly discussions on health-related topics selected from extant frailty literature, including sleep, physical activity, fatigue, slowness, pain, and mood (Clegg et al., 2013; Zaslavsky et al., 2013; Zaslavsky, Thompson, & Demiris, 2012). Each week, a discussion prompt was presented on the featured topic.
The discussion was conducted in a secret Facebook® group, which is a Facebook group type that is both private and not searchable, whereas the private group type is still searchable. Figure 1 displays an example prompt. Figure 2 shows the layout of the discussion board. The discussion among participants was facilitated by a group moderator, a member of the study team (S.-Y.L.). The moderator responded to participants' posts and comments within 24 hours to acknowledge and encourage participation and/or ask follow-up questions but remained neutral and did not provide any personal or health-related recommendations.
Example of weekly discussion prompt.
General layout of the online virtual community.
At the beginning and end of the study, three authors (A.T., S.H., S.-Y.L.) administered, in-person, a set of questionnaires described below. At the end of the study, the authors debriefed participants about their study experience. Prior to the online discussions, a study team member (A.T.) provided two one-on-one in-person Facebook training sessions to all participants to ensure that they were capable of accessing and posting in the secret group. The first training session was provided at enrollment and the second session approximately 1 week later. Additional in-person booster training sessions were provided when participants encountered technical issues that the study team could not resolve remotely. This study was approved by the University of Washington Institutional Review Board.
In this pilot study, feasibility was measured by participant retention and posting frequency. Data were collected on participants' demographic characteristics, health literacy, and health information behavior and health management strategies using questionnaires developed from previous research on health literacy (Edwards, Wood, Davies, & Edwards, 2012) and health information behavior (Chen, 2012b). General health self-efficacy was measured using the Health Self-Efficacy scale (Lee, Hwang, Hawkins, & Pingree, 2008), chronic disease management self-efficacy using the Self-Efficacy for Managing Chronic Disease 6-item Scale (Lorig, Sobel, Ritter, Laurent, & Hobbs, 2001), and health literacy using the abbreviated version of the Test of Functional Health Literacy in Adults (Baker, Williams, Parker, Gazmararian, & Nurss, 1999). To assess mobility limitations, participants completed a 4-meter gait speed test at enrollment.
Descriptive statistics were used to summarize (a) participant characteristics, including demographics, health literacy, health management self-efficacy, and chronic disease management self-efficacy at baseline; and (b) changes in self-efficacy and health literacy scores from before to after the 10-week online discussion.
Qualitative data analysis was performed to examine participants' discussion responses. Grytics, a Facebook scraping service, was used to extract the responses from the group, and ATLAS.ti (v8) was used to assist with the coding and analysis. Two members of the study team (A.T., S.H.) independently analyzed and coded subsets of the content created by participants who completed the 10-week study. Once completed, the two coders met to compare and discuss codes until a complete consensus was reached. This process was repeated iteratively until all responses were coded and all codes were agreed upon (Hinton, Kurinczuk, & Ziebland, 2010).
The identified themes were based on extant literature on self-management as well as themes about aging-related symptoms and management strategies that emerged from the data. Codes were grouped into three categories based on the topics of interest in the current study: (a) aging-related symptoms, (b) management or coping strategies, and (c) usability. Findings relating to the first two themes are described in this article and the third theme of usability will be addressed in a future publication.
Participant Characteristics and Engagement
Thirteen interested older adults were screened; eight met the study eligibility criteria and were enrolled (26.7% male; 100% White; age range = 79 to 90 years [mean (SD) age = 84 (4.41) years]). Two participants dropped out after 6 weeks due to lack of interest, resulting in six participants who completed the study (retention rate = 75%). Per the protocol, two additional booster training sessions were provided to two separate participants as needed. All enrolled participants lived in the same retirement community, held at least an associate's degree (Table 1), and were existing Facebook users. Most were somewhat comfortable with computers before the start of the study.
Baseline Participant Characteristics (N = 8)
Participants who completed the study demonstrated a positive trend of change in average health management self-efficacy score and chronic disease management self-efficacy scores (Table 2). However, a small decline was observed in the average health literacy score, which was likely due to the high baseline score (34/36). In addition, one participant who completed this timed test within the allowed timeframe at pretest failed to do so at posttest, lowering the average posttest score.
Changes in Outcome Measures
During the 10-week discussion, participants shared their experiences on the aforementioned topics, contributing 133 responses (Table 3). Notably, participants began to discuss certain topics such as pain in early weeks before these topics were formally introduced by the moderator in the later weekly discussion prompts. Participants' average weekly posting frequency ranged from 1.9 to 2.9 posts per week.
Breakdown of Response Frequency by Participant (N = 6)
Symptoms. The most discussed symptoms among participants were pain (18 comments), weakness and tiredness (18 comments), and sleep difficulties (8 comments). Many older adults provided vivid descriptions of pain from previous surgeries, arthritis, or sciatica: “experiencing sharp, shock-like pains running from the sacrum over to the right hip joint and then running down the outside of the right leg and finally wrapping around the foot, ending up under the arch of the right foot” [ID 104]. Weakness and tiredness were also common: “Weaker are my leg muscles so it's difficult to raise from a squat. I am liking chairs with arms more and more. Being low energy results in boredom and weight gain” [ID 109]. Sleep difficulties also contributed to weakness; as one participant said:
[I] fall asleep easily and often, but due to bladder problems I wake up and get up. I easily fall asleep again, but never have a full night of sleep. This is getting worse and I am taking frequent naps during the day now.
Furthermore, some older adults were open to expressing personal feelings surrounding grief and depression. For example, one participant shared, “life is relatively dull and routine. I have fun times, but more that aren't. I do work at keeping on smiling and know that interaction with others is a prime key to keeping me in a good mood” [ID 106].
History (18 comments) leading up to older adults' current health issues was also discussed. One participant explained her past with regard to weight changes: “Back to when I quit smoking 31 years ago, I did gain weight. Over the years I have stayed pretty much the same, about 10–15 lbs overweight” [ID 105]. Some participants talked about their desires to exercise more or eat more healthily, whereas others felt guilty about not being able to do so.
Management and Coping Strategies. Three subthemes were identified under the management and coping strategies theme: (a) symptom management, (b) health behavior change, and (c) psychosocial support through family or friends. Conversations on physical activity–related behavior change and symptom management (10 comments) and medication (16 comments) were most common. Several older adults shared changes that they made to adapt and cope with aging-related symptoms. For example, one explained, “I have developed intermittent pain as I aged. Often sciatica pain when I walk. To stop it, I stop walking. Walking downstairs, I get pain in my knees. So I try not to walk down stairs,” and “my moods can be modified by reframing my thoughts, listening to beautiful music, a glass of delicious wine, a hug from my husband or knowing I have done something to help someone else” [ID 109]. Another participant described how she manages her shoulder weakness:
I use my left arm for support when I need to lift with the right. I avoid walking down the stairs, or else do it like a toddler, favoring my right side. I do both arm and leg exercises carefully...but regularly to try to keep some strength.
Some participants shared similar symptom management strategies, but there were also unique strategies. For example, one participant described:
I am taking a boxing class which was recommended by my physical therapist because I have a progressive neurological disorder. My boxing class has several people with Parkinson's and they report that it helps them a lot. My main issue is balance so I try to go three times a week.
Similarly, health behavior changes (26 comments) were also described. For example, “I used to go regularly to the 8:30 exercise class but find that the 9:30 alternative works better for me. I have found that I can keep much more limber (pliable) and my balance is better” [ID 106].
In addition, participants provided social support to one another (40 comments) through words of encouragement or discussing acts of support from other residents or health care providers. For example, one participant stated, “We are so sad about your pain and physical problems. We support you in anything you do to keep trying to improve your life” [ID 109].
Feasibility and Engagement of a Moderated Online Discussion
The results of the current pilot study suggest that it is feasible to engage older adults in conversations about their aging and frailty-related experiences in a moderated Facebook discussion platform. Enrollment and retention were moderately successful, with six (75%) of eight enrolled participants completing the 10 weeks of discussions. Although two participants dropped out due to lack of interest, most of the remaining participants used the platform on average at least twice per week. All participants had existing Facebook accounts before the start of the study and succeeded in sharing their age-related experiences and health management strategies. In addition, consistent with the authors' expectation, the moderated discussions produced small but positive changes in self-efficacy.
Participants were receptive to the open-ended weekly prompts and responded with personal experiences, which in turn helped engage other participants. All participants who completed the study noted at the time of exit interview that they enjoyed the moderation of the discussion board and found the moderator's responses, consisting of follow-up questions and support, timely and engaging. The moderator maintained a neutral position while encouraging discussion amongst participants. The positive reception to the moderator is consistent with prior studies that have noted the importance of moderation (Huh, Marmor, & Jiang, 2016; Kaplan, Chen, & Carriere, 2017).
Exchanging Information and Support to Promote Healthy Lifestyles
The current study provided insight into how older adults might use an online discussion platform to engage with each other about symptoms and self-management strategies. The most frequently reported symptoms were pain, weakness and tiredness, and sleep difficulties. Participants reported strategies for adapting to aspects of their health situations, such as taking boxing classes to help with deteriorating functional ability and wearing ear plugs to help with sleep difficulties. The process of listening to one's body has been observed to be a dialogic process in which individuals learn and develop routines for managing physiological changes over time (Chen et al., 2017), and discussion groups such as these can assist older adults to exchange information about health management, which may benefit their peers. Carnevali et al. (2019) also advocate for purposeful self-management of age-related changes, which involves recognition and adoption of proactive strategies for these changes.
Previous literature has observed that virtual communities can provide social support and reduce experiences of loneliness (Choi, Kong, & Jung, 2012), and the current findings also support this observation. For instance, participants empathized with each other when expressing their symptoms, relating with each other's experiences, and supporting each other. In the exit interview, some participants mentioned learning more about one other even though they lived in the same facility. These interactions could all serve as a form of support and reduce social isolation.
Limitations and Future Directions
The current study had several limitations, including a small sample, a retention rate of 75%, and lack of racial and demographic diversity, as all participants were White and resided at the same retirement community. These factors limit the generalizability of findings, although the authors believe that most of the aging-related themes identified would still be reflected on other social platforms with different demographics. In addition, some participants said that they would have been more open and willing to share additional information if the group comprised strangers. Future studies could recruit older adults in multiple locations and of different racial, educational, and cultural backgrounds. In the exit interviews, although most participants found the weekly health-related topics engaging, some wished to see fewer general topics and delve deeper into more personal and sensitive topics such as end-of-life care issues. This feedback suggests that it would be useful to conduct more research to understand topics that older adults might want to discuss, and how to tailor these discussions to their needs.
Implications for Practice
The current findings provide insight to gerontological nursing practice. First, although 10 weekly topics were presented, some topics, such as pain and physical activity, were mentioned particularly frequently, even outside of anticipated weeks. As previous studies with older adults have reported, these symptoms are interrelated (Chen, Yen, Dai, Wang, & Huang, 2011; Lindstrom, Andersson, Lintrup, Holst, & Berglund, 2012; Vaz Fragoso & Gill, 2007). Promoting self-management strategies that target these symptoms together might improve aging-related experiences.
The current findings have implications concerning ways that clinicians, in general, and nurses, more specifically, can facilitate older adults' management of aging-related changes. Primomo et al. (2019) emphasize the importance of the insider perspective. The online discussion platform encouraged participants to think about and share strategies that they themselves had adopted, which could in turn be tried by others. Moderation was an important facilitator of this process. Previous research has used a team of moderators with a mix of perspectives, but primarily comprised “insiders” to chronic illness management (Kaplan et al., 2017). In the current study, a moderator who was an “outsider” was used but she focused on bringing out these insider perspectives. Future research can explore differences in moderation styles in terms of the experience of sharing of health-related experiences among older adults. In addition, nurses receive extensive training in patient education and communication, and they could potentially serve as effective moderators to elicit insider perspectives.
The study also highlights directions in which additional research is needed concerning usability. Although all participants had an existing Facebook account, some were unaccustomed to using Facebook and expressed confusion about the platform, such as forgetting to press the enter key to post their thoughts on the discussion board. Moreover, some participants had mobility and fine-motor issues due to Parkinson's disease and arthritis. Automatic pop-up messages/alerts asking older adults whether they would like to submit their post, voice recognition technology to facilitate post authoring, and additional training could all serve to alleviate these issues when older adults are asked to interact with technology in the home or clinical settings.
An online platform for older adults to exchange their experiences and strategies to manage bodily changes and symptoms resulting from aging and chronic health conditions was piloted. The results suggest that virtual discussions can facilitate information exchange among older adults, empower them to leverage their own acquired knowledge along with those of their peers, and promote health and symptom management. These findings add to a growing literature that suggests older adults might reap benefits from technology-enhanced strategies that can support health.
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Baseline Participant Characteristics (N = 8)
|Female (n, %)||5 (62.5)|
|Age (years) (mean/SD/range)||84/4.41/79 to 90|
|White (n, %)||8 (100)|
|Education (n, %)|
| High school diploma or GED||1 (12.5)|
| Vocation or associate's degree||1 (12.5)|
| Baccalaureate degree||2 (25)|
| Master's degree||1 (12.5)|
| Doctoral degree (e.g., PhD, MD, JD)||3 (37.5)|
|Computer usea (n, %)|
| Somewhat uncomfortable||2 (25)|
| Somewhat comfortable||5 (62.5)|
| Very comfortable||1 (12.5)|
|Prior Facebook® use (n, %)|
| Yes||8 (100)|
|Device used (n, %)|
| Laptop or desktop||6 (75)|
| iPad® or iPhone®||2 (25)|
|Gait speed (m/s) (mean/SD/range)||0.89/0.34/0.53 to 1.67|
|Baseline Health Self-Efficacyb (mean/SD/range)||3.65/0.69/2.8 to 4.6|
|Baseline Chronic Disease Management Self-Efficacyc (mean/SD/range)||7.17/2.25/4.17 to 10|
|Baseline S-TOFHLAd (mean/SD/range)||34/1.85/30 to 36|
Changes in Outcome Measures
|Measure||Mean (SD) Change Score||n|
|Health Self-Efficacy||0.2 (0.6)||6|
|Chronic Disease Management Self-Efficacy||0.3 (0.6)||5|
Breakdown of Response Frequency by Participant (N = 6)
|Participant ID (Age/Sex)||Week 1||Week 2||Week 3||Week 4||Week 5||Week 6||Week 7||Week 8||Week 9||Week 10||Participant Response Total (Average Response Per Week)|
|102 (81/F)||4||5||2||1||2||1||1||1||2||0||19 (1.9)|
|103 (84/F)||3||3||0||2||0||3||2||1||3||2||19 (1.9)|
|104 (79/M)||4||2||0||0||1||4||2||3||2||2||20 (2.0)|
|105 (80/F)||2||4||5||2||2||1||1||2||1||2||22 (2.2)|
|106 (89/F)||4||5||2||2||4||3||2||4||2||1||29 (2.9)|
|109 (81/F)||5||2||2||2||2||3||1||3||0||4||24 (2.4)|