Illness blogs

Background: During an infodemic, timely, reliable, and accessible information is crucial to combat the proliferation of health misinformation. While message testing can provide vital information to make data-informed decisions, traditional methods tend to be time-and resource-intensive. Recognizing this need, we developed the rapid message testing at scale (RMTS) approach to allow communicators to repurpose existing social media advertising tools and understand the full spectrum of audience engagement. Objective: We had two main objectives: (1) to demonstrate the use of the RMTS approach for message testing, especially when resources and time are limited, and (2) to propose and test the efficacy of an outcome variable that measures engagement along a continuum of viewing experience. Methods: We developed 12 versions of a single video created for a vaccine confidence project in India. We manipulated video length, aspect ratio, and use of subtitles. The videos were tested across 4 demographic groups (women or men, younger or older). We assessed user engagement along a continuum of viewing experience: obtaining attention, sustaining attention, conveying the message, and inspiring action. These were measured by the percentage of video watched and clicks on the call-to-action link. Results: The video advertisements were placed on Facebook for over 4 consecutive days at the cost of US $450 and garnered a total of 3.34 million impressions. Overall, we found that the best-performing video was the shorter version in portrait aspect ratio and without subtitles. There was a significant but small association between the length of the video and users' level of engagement at key points along the continuum of viewing experience (N=1,032,888; χ 2 4 =48,261.97; P<.001; V=.22). We found that for the longer video, those with subtitles held viewers longer after 25% video watch time than those without subtitles (n=15,597; χ 2 1 =7.33; P=.007; V=.02). While we found some significant associations between the aspect ratio, the use of subtitles, and the number of users watching the video and clicking on the call-to-action link, the effect size for those were extremely small. Conclusions: This test served as a proof of concept for the RMTS approach. We obtained rapid feedback on formal message attributes from a very large sample. The results of this test reinforce the need for platform-specific tailoring of communications. While our data showed a general preference for a short video in portrait orientation and without subtitles among our target audiences on Facebook, that may not necessarily be the case in other social media platforms such as YouTube or TikTok, where

Background: The transformative storytelling technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centered design in developing digital self-help tools for larger samples or target groups. Objective: This study applied the transformative storytelling technique, as a new approach in mental health, to develop empowering audio narratives for informal caregivers. Methods: A narrative inquiry was conducted with 17 informal caregivers (16 women and 1 man) who completed a semistructured interview, "Caregiver Life Story," acquiring information about the beginning of the role, rising action, and critical point of the role. The participants' ages ranged from 41 to 84 years, with all participants providing care for at least a 6-month period. This inquiry was guided by the transformative storytelling technique, and aimed to collect data relevant to creating fictional stories based on real-life themes. Results: Twenty-five overall themes were distinguished across three a priori-set categories, providing narrative building blocks for the informal caregiver life stories. The final empowering caregiver life story was created as an example for this study, demonstrating the application of the transformative storytelling technique in an informal care context. Conclusions: The creation of empowering stories for populations or target groups in mental health care requires a unified and guided approach that will follow clear guidelines and storytelling principles. The transformative storytelling technique is a first of its kind in the mental health context, representing an initial step in enabling and supporting the creation of meaningful stories and the development of relatable, but productive, narratives. Such narratives have the potential to serve across media and digital platforms for supporting and improving well-being, and potentially triggering self-change in the target group or population.

Clinical guidelines provide systematically developed recommendations for deciding on appropriate health care options for specific conditions and clinical circumstances. Up until recently, patients and caregivers have rarely been included in the process of developing care guidelines. This project will develop and test a new online method for including patients and their caregivers in this process using Duchenne muscular dystrophy (DMD) care guidelines as an example. The new method will mirror and complement the RAND/UCLA Appropriateness Method (RAM)-the gold standard approach for conducting clinical expert panels that uses a modified Delphi format. RAM is often used in clinical guideline development to determine care appropriateness and necessity in situations where existing clinical evidence is uncertain, weak, or unavailable. To develop the new method for engaging patients and their caregivers in guideline development, we will first conduct interviews with experts on RAM, guideline...

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7-17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N = 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

Background Social media platforms have experienced unprecedented levels of growth and usage over the past decade, with Facebook hosting 2.7 billion active users worldwide, including over 200 million users in the United States. Facebook users have been underutilized and understudied by the academic community as a resource for participant recruitment. Objective We performed a pilot study to explore the efficacy and cost-effectiveness of Facebook advertisements for the recruitment of an online agricultural health and safety survey. Methods We undertook a 1-week advertising campaign utilizing the integrated, targeted advertising platform of Facebook Ads Manager with a target-spending limit of US $294. We created and posted three advertisements depicting varying levels of agricultural safety adoption leading to a brief survey on farm demographics and safety attitudes. We targeted our advertisements toward farm mothers aged 21-50 years in the United States and determined cost-effectivenes...

BACKGROUND Social media websites have unprecedented levels of growth and usage over the past decade, with Facebook.com hosting 2.5 billion active users worldwide and over 200 million Americans. This population has been underutilized and understudied by the academic community as a resource for participant recruitment. OBJECTIVE We explore the efficacy of Facebook.com recruitment for an online agricultural health and safety survey METHODS We undertook a pilot study lasting one week on Facebook utilizing their integrated, targeted advertising platform – Facebook Ads Manager. We posted three advertisements depicting varying levels of agricultural safety adoption leading to a brief survey on farm demographics and safety attitudes. We targeted our advertisements towards farm mothers aged 21-50 in the United States and determined cost-effectiveness and potential biases. RESULTS Three, one-week advertisements were listed concurrently for $294 USD, total. We reached over 40,000 users and gat...

Background Social media platforms have experienced unprecedented levels of growth and usage over the past decade, with Facebook hosting 2.7 billion active users worldwide, including over 200 million users in the United States. Facebook users have been underutilized and understudied by the academic community as a resource for participant recruitment. Objective We performed a pilot study to explore the efficacy and cost-effectiveness of Facebook advertisements for the recruitment of an online agricultural health and safety survey. Methods We undertook a 1-week advertising campaign utilizing the integrated, targeted advertising platform of Facebook Ads Manager with a target-spending limit of US $294. We created and posted three advertisements depicting varying levels of agricultural safety adoption leading to a brief survey on farm demographics and safety attitudes. We targeted our advertisements toward farm mothers aged 21-50 years in the United States and determined cost-effectivenes...

BACKGROUND Social media websites have unprecedented levels of growth and usage over the past decade, with Facebook.com hosting 2.5 billion active users worldwide and over 200 million Americans. This population has been underutilized and understudied by the academic community as a resource for participant recruitment. OBJECTIVE We explore the efficacy of Facebook.com recruitment for an online agricultural health and safety survey METHODS We undertook a pilot study lasting one week on Facebook utilizing their integrated, targeted advertising platform – Facebook Ads Manager. We posted three advertisements depicting varying levels of agricultural safety adoption leading to a brief survey on farm demographics and safety attitudes. We targeted our advertisements towards farm mothers aged 21-50 in the United States and determined cost-effectiveness and potential biases. RESULTS Three, one-week advertisements were listed concurrently for $294 USD, total. We reached over 40,000 users and gat...

Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. Methods: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). Results: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). Conclusions: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes.

BACKGROUND Successful recruitment of participants is imperative to a rigorous study, and recruitment challenges are not new to researchers. Social media has been used successfully by many researchers to recruit for study participants. However, challenges remain for effective online social media recruitment. OBJECTIVE Using a multi-step approach, that included a focus group and Delphi method, the purpose of the study was to gain expert advice about social media recruitment material development and then to test the recruitment material with the target population. METHODS First, we conducted a focus group with five social media experts to identify critical elements for effective social media recruitment material. The second phase, utilizing the Delphi method with five family caregivers, was used to reach consensus regarding effective recruitment videos. RESULTS Phase I utilized a focus group that resulted in identification of three barriers related to social media recruitment, includin...

Background: The debilitating effects of recurrent stroke among aging patients have urged researchers to explore medication adherence among these patients. Video narratives built upon Health Belief Model (HBM) constructs have displayed potential impact on medication adherence adding a plus-point to patient education efforts. However, its effect on medication understanding and use self-efficacy have not been tested. Objective: The researchers believed that culturally sensitive video narratives which catered specific niche would reveal a personalized impact on medication adherence. This study aimed to develop and validate video narratives for this purpose. Methods: This study adapted Delphi method to develop a consensus on the video scripts contents of learning outcomes and HBM questions. The panel of experts consisted of eight members representing a mix of experiences in stroke in Malaysia. The Delphi method involved three rounds of discussion. Once consensus was achieved, the researchers drafted the initial scripts in English which were then back-translated to the Malay language. Ten bilingual patients within inclusion criteria screened the scripts for comprehension. Subsequently, an actual doctor and patient narrated the scripts while they were filmed; to add the realism of the narratives. Then, the video narratives underwent a few cycles of editing after some feedback on video engagement by the bilingual patients. Few statistical analysis were applied to confirm the validity of the video narratives. Results: Initially, the researchers proposed eight learning outcomes and nine HBM questions for the video scripts content. However, following Delphi rounds 1 to 3, few statements were omitted and rephrased. Complete agreement (>80%) arrived for five learning outcomes and five HBM questions. Kendall's coefficient of concordance, W; was above 0.7 which indicated a firm agreement, and SD values within a range of below 1.5 confirmed satisfactory content and construct validity of learning outcomes and HBM questions. Also, the video engagement scores were above average which indicated that the video narratives had a good link with perceived realism. Conclusions: The Delphi method was proven to be helpful in conducting discussion systematically and providing precise contents for the development of video narratives. Whereas, the video engagement scale had helped to create realistic video styles and emotions which the researchers believed could positively impact medication understanding and use self-efficacy among patients with stroke. A feasibility and acceptability study in an actual stroke care center is warranted.

Introduction: Online participant recruitment for public health research studies has increased dramatically in recent years, particularly as traditional recruitment strategies have waned in efficiency. The emergence of eepidemiology offers possibilities for reaching understudied populations as well as conducting large-scale studies. Methods: We conducted a cross-sectional survey focused on self-reported neighborhood characteristics, perceived stress, and feasibility of obtaining work/residential addresses via online recruitment in St. Louis, Missouri, USA from February 2017 to December 2017. We report the process of using Facebook recruitment and demonstrate how this strategy can enhance collection of geospatial data to better understand context and spatial patterns of disease. Results: A total of 425 participants were recruited via Facebook advertisements. All participants reported their residential and work ZIP codes, though only 64.7% and 45.6% provided their complete residential and work street addresses, respectively. Those who reported their complete residential street addresses were more likely to be female (69.8% vs. 56.1% of males, χ 2 = 7.89, 1 df, p = 0.005), though no differences were observed by race, age, or employment status. Discussion: These findings indicate that valuable location data can be successfully collected via Facebook recruitmentdata that could potentially include residential history or prospective follow-up time or be combined with other emerging technologies for geographic data in order to better understand the context and the effects of place on health outcomes. Conclusions: Facebook recruitment may be an underutilized resource for obtaining accurate geospatial and contextually relevant health data and should be considered as a means for finding participants due to the costeffectiveness, efficiency and flexibility of this recruitment approach.

BACKGROUND The quality and quantity of families’ support systems during pregnancy can affect maternal and fetal outcomes. The support systems of expecting families can include many elements, such as family members, friends, and work or community groups. Emerging health information technologies (eg, social media, internet websites, and mobile apps) provide new resources for pregnant families to augment their support systems and to fill information gaps. OBJECTIVE This study sought to determine the number and nature of the components of the support systems of pregnant women and their caregivers (eg, family members) and the role of health information technologies in these support systems. We examined the differences between pregnant women’s support systems and those of their caregivers and the associations between support system composition and stress levels. METHODS We enrolled pregnant women and caregivers from advanced maternal-fetal and group prenatal care clinics. Participants com...

This web-based study recruited kidney transplant recipients from Facebook using three recruiting methods over a 5-week period. Participants completed 125 survey items via REDCap (Research Electronic Data Capture) survey. Facebook recruitment generated 153 eligible participants who completed surveys. The average survey response time was 15.07 min ( SD = 6.12; range: 4-43), with a low missing item rate (&lt;5%). Facebook’s standard ads were most effective for recruiting subjects ( n = 78, 51%), followed by three targeted Facebook kidney transplant support groups ( n = 52, 34%) and a pay-to-promote study page ( n = 12, 7.8%). The average cost paid for each valid survey was US$2.19 through standard Facebook ads and US$2.92 from the study page. The cost for online survey completion is economically feasible even for those with limited funds. Issues related to online surveys including extreme survey response times and participant misrepresentation were reported in this study.

Clinical guidelines provide systematically developed recommendations for deciding on appropriate health care options for specific conditions and clinical circumstances. Up until recently, patients and caregivers have rarely been included in the process of developing care guidelines. This project will develop and test a new online method for including patients and their caregivers in this process using Duchenne muscular dystrophy (DMD) care guidelines as an example. The new method will mirror and complement the RAND/UCLA Appropriateness Method (RAM)-the gold standard approach for conducting clinical expert panels that uses a modified Delphi format. RAM is often used in clinical guideline development to determine care appropriateness and necessity in situations where existing clinical evidence is uncertain, weak, or unavailable. To develop the new method for engaging patients and their caregivers in guideline development, we will first conduct interviews with experts on RAM, guideline...

BACKGROUND Background: The use of online health communities such as the diabetes online community (DOC) is growing. Individuals who engage in the diabetes online community (DOC) are able to interact with peers who have the same medical condition. It is not known if older adults are perceiving the DOC differently than younger adults. OBJECTIVE Objective: The purpose of this study was two-fold: 1) to describe social capital, perceived source credibility, help and harm among DOC users, and 2) to examine differences in social capital, perceived source credibility, help and harm among baby boomer (born between 1946 and 1964) and younger adult (born between 1965-1996) DOC users. METHODS Methods: This study represents a subset of participants from a larger study of DOC users. Adults with diabetes were recruited from the DOC to participate in a cross-sectional survey. Baby boomer and younger adult demographics, eHealth use (reasons to join the DOC, DOC intensity, DOC engagement, internet so...

BACKGROUND There is an increasing need to organise the care around the patient and not the disease, as well as taking into account the complex realities of multiple physical, psycho-social conditions and polypharmacy. Integrated patient-centred care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced ICT solutions. OBJECTIVE The C3-Cloud project has developed two collaborative computer platforms for patients and members of the Multi-Disciplinary Team and deployed these in three different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients, informal caregivers, healthcare professionals and, in extend, healthcare systems. METHODS This paper describes the protocol for conducting an evaluation of the user-centred design, user experience, acceptabil...

Background This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. Objective The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. Methods A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. Results The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a...

BACKGROUND Successful recruitment of participants is imperative to a rigorous study, and recruitment challenges are not new to researchers. Social media has been used successfully by many researchers to recruit for study participants. However, challenges remain for effective online social media recruitment. OBJECTIVE Using a multi-step approach, that included a focus group and Delphi method, the purpose of the study was to gain expert advice about social media recruitment material development and then to test the recruitment material with the target population. METHODS First, we conducted a focus group with five social media experts to identify critical elements for effective social media recruitment material. The second phase, utilizing the Delphi method with five family caregivers, was used to reach consensus regarding effective recruitment videos. RESULTS Phase I utilized a focus group that resulted in identification of three barriers related to social media recruitment, includin...

Background: Illness blogs are a way seriously ill people communicate publicly about their illness journey. As communication about serious illness increases on social media, it is important to evaluate how this affects the family caregiver. However, identifying and accessing family caregivers remains challenging, especially via social media. Purpose: The aim of this article is to report the opportunities, challenges and lessons learned from using social media to recruit family caregivers. Methods: Recruitment methods included posting study invitations on illness blogs, advertising through Facebook and placing study fliers in the community. Results: Using social media to recruit was inexpensive and provided a wide geographical reach. One important finding was discovering the importance of using language in the recruitment materials that family caregivers could identify with to help deem themselves as eligible to participate in the study.

Life-limiting illness affects both the ill person and family caregivers in significant ways. Illness blogs provide an innovative way for families and friends to connect as the ill person shares his/her experiences. Phenomenological methods were used to explore the experiences of family caregivers. Semistructured interviews were conducted with 9 family caregivers. The overarching theme, ''we are all in this together,'' emerged from the data and was supported by 3 subthemes: ''enhancing communication,'' ''finding and accepting support,'' and ''navigating new roles.'' ''Enhancing communication'' was the experience of reading the illness blog, which enhanced the caregiver's understanding of his/her loved one's perceptions of the illness. ''Finding and accepting support'' was described as seeking support from others experiencing similar situations, which provided comfort knowing that they were not alone. In addition, the illness blog offered clarification for ''navigating new roles'' for the family caregiver. The illness blogs became a tool for communication and connection with the ill person, leading to face-to-face conversations, support for and from others, and comfort and hope for positive outcomes. The findings of this study demonstrate an innovative approach to understanding how family caregivers and their loved ones with life-limiting illnesses communicate and enhance their relationship.

Background: Successful recruitment of participants is imperative to a rigorous study, and recruitment challenges are not new to researchers. Many researchers have used social media successfully to recruit study participants. However, challenges remain for effective online social media recruitment for some populations. Objective: Using a multistep approach that included a focus group and Delphi method, researchers performed this study to gain expert advice regarding material development for social media recruitment and to test the recruitment material with the target population. Methods: In the first phase, we conducted a focus group with 5 social media experts to identify critical elements for effective social media recruitment material. Utilizing the Delphi method with 5 family caregivers, we conducted the second phase to reach consensus regarding effective recruitment videos. Results: Phase I utilized a focus group that resulted in identification of three barriers related to social media recruitment, including lack of staff and resources, issues with restrictive algorithms, and not standing out in the crowd. Phase II used the Delphi method. At the completion of Delphi Round 1, 5 Delphi participants received a summary of the analysis for feedback and agreement with our summary. Using data and recommendations from Round 1, researchers created two new recruitment videos with additions to improve trustworthiness and transparency, such as the university's logo. In Round 2 of the Delphi method, consensus regarding the quality and trustworthiness of the recruitment videos reached 100%. Conclusions: One of the primary challenges for family caregiver research is recruitment. Despite the broad adoption of social media marketing approaches, the effectiveness of online recruitment strategies needs further investigation.

Background The COVID-19 pandemic has evolved into one of the most impactful health crises in modern history, compelling researchers to explore innovative ways to efficiently collect public health data in a timely manner. Social media platforms have been explored as a research recruitment tool in other settings; however, their feasibility for collecting representative survey data during infectious disease epidemics remain unexplored. Objectives This study has two aims 1) describe the methodology used to recruit a nationwide sample of adults residing in the United States (U.S.) to participate in a survey on COVID-19 knowledge, beliefs, and practices, and 2) outline the preliminary findings related to recruitment, challenges using social media as a recruitment platform, and strategies used to address these challenges. Methods An original web-based survey informed by evidence from past literature and validated scales was developed. A Facebook advertisement campaign was used to dissemina...

Objective: Research at the end of life tends to focus on the dying patient&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s symptoms, often overlooking issues associated with family interactions. However, many families struggle just to maintain or initiate these valuable connections. The purpose of our pilot study was to explore family relationships at the end of life and investigate associations among perceived comfort, relatedness states, and life closure. Method: This descriptive study used a cross-sectional design, and a convenience sample (n = 30; 18 women; mean age = 71 years) was recruited from patients admitted to a large not-for-profit hospice in northeastern Ohio. In-person interviews using the Hospice Comfort Questionnaire, Relatedness States Visual Analog Scales, and the Life-Closure Scale provided data for analyses. Results: Family interactions that were not associated with the physical tasks of caregiving were related to life closure (r = 0.36, p = 0.001), and life closure and comfort were highly correlated (r = 0.69, p &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt; 0.001). Participants residing in an inpatient setting had higher levels of involvement (t[18] = -2.07, p = 0.05) and comfort in relationships (t[28] = -2.06, p = 0.05) than those in the home setting. Significance of Results: This is the first known study investigating the associations among comfort, relatedness, and life closure at the end of life. The majority of participants had high levels of involvement and comfort in their relationships, and they preferred interactions that required minimal effort. Studies that focus on both patients&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; and family members&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; perceptions of relationships are needed as well as outcome studies that test simple interventions.