Illness blogs

Objective: Research at the end of life tends to focus on the dying patient'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 < 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' and family members' perceptions of relationships are needed as well as outcome studies that test simple interventions.

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.

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.