Feasibility, usability, and acceptability of personalized web-based assessment of social network and daily social support interactions over time

Abstract

Purpose The purpose of this study was to test the feasibility, usability, and acceptability of implementing a web-based method for collecting social network and longitudinal daily interaction data from cancer survivors and their caregivers. Methods Young adult and sexual/gender minority cancer survivors and their informal caregivers were recruited as dyads. Feasibility data, including enrollment and retention, were captured. Individual social network data were collected at baseline and used to individualize daily electronically delivered surveys assessing characteristics of daily social support-related interactions with identified network members for 14 days. Follow-up questionnaires assessing usability and exit interviews assessing acceptability were completed at the end of the 2-week study period. Results Fourteen survivor-caregiver dyads (28 individual participants) were enrolled and completed all baseline and final measures. Participants completed 85.2% of daily diary reports and reported excellent usability ratings. Acceptability was also high. In qualitative interviews, participants reported enjoying the daily reflection on social support facilitated by our methods. Conclusions Our method has been shown to be highly feasible, usable, and acceptable. Implications for Cancer Survivors Developing better data collection tools can lead to better understanding of the social support cancer survivors and their caregivers receive, and how the social network structure facilitates or creates barriers to accessing this support.

Hospice Caregivers’ Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support

“…For example, coworkers and neighbors can offer seemingly small but important support, such as flexibility in scheduling meetings or helping with yard maintenance, that frees up caregiver time and mental load. Research on non-biological/legal family support and the importance of broader social networks in caregiving is limited but growing [ 35 , 36 , 37 ]; future work can elucidate how caregivers can best leverage this support.…”

Exploring Social Support Networks and Interactions of Young Adult and LGBTQIA+ Cancer Survivors and Care Partners

“…The very few studies addressing the social support networks of transgender and gender diverse people also highlight the protective effects of adequate social support networks for buffering effects of discrimination and stress and improving health outcomes (38,39) The purpose of our study was to pilot an individualized, prospective, observational approach to assess characteristics of the personal social support networks and patterns within daily support interactions of a sample of cancer survivors and care partners focusing on YA and LGBTQIA+ individuals. To do so, we developed a novel online method combining social network assessment (structural factors) and prospective daily interaction diaries (functional factors) and we report on the development, feasibility, and acceptability of these methods elsewhere (40).…”