Summary of Preliminary Work
Our systematic development of familyroom.health began with foundational research examining nurse considerations and family family caregiver preferences, revealing which interventions would be both clinically acceptable and desired by families. These insights informed our initial platform (ICU-CARE), which we tested in a feasibility trial to validate basic functionality and acceptability. Building on these learnings, we developed an enhanced version (familyroom.health) with electronic health record integration capabilities, which we validated through comprehensive usability testing. Our current clinical trial (NCT06463158) is examining preliminary efficacy and patient outcomes, establishing the evidence foundation for future large efficacy trials as well as eventual commercialization and scale.
Foundational Research Conducted by our Team
Nurse Study
ICU nurse endorsement of family caregiver involvement.
Our team conducted a national survey of nurses to explore nurses’ perceptions of family caregiver involvement in patient care. Our results indicated that nurses are most likely to invite family caregivers to provide simple daily care and confirmed that nurse workflow is an important factor to consider when developing family caregiver involvement interventions. This study supports the use of nonpharmacologic symptom management interventions by family caregivers, which is the focus of familyroom.health. These interventions support patient comfort and ease nurse workload.
Citations
Hetland, B., McAndrew, N., Perazzo, J., & Hickman, R. (2018). A qualitative study of factors that influence active family involvement with patient care in the ICU: Survey of critical care nurses. Journal of Intensive and Critical Care Nursing, 44, 67-75. https://doi.org/10.1016/j.iccn.2017.08.008
Hetland, B., Hickman, R. McAndrew, N. & Daly, B. (2017). Factors influencing active family engagement in care among critical care nurses. AACN Advanced Critical Care, 28(2), 160-170. https://doi.org/10.4037/aacnacc2017118
Family Caregiver Study
ICU family caregivers’ perceptions of involvement in patient care.
We conducted a cross-sectional correlational study of family caregivers (n=127) to explore factors associated with family caregiver readiness to participate in patient care and the types of patient care activities that family caregivers want to participate in. We found that the mental health of family caregivers is inversely related to their caregiving preparation, motivation, and self-efficacy. Family caregivers want to be involved in patient care (>95% of respondents) and have preferences for the specific activities they want to do. Of note, many family caregivers expressed interest in nonpharmacologic approaches (i.e., music and massage), and yet, less than 50% of family caregivers reported participating in these activities. This study validates the inclusion of nonpharmacologic symptom management approaches as the focus of familyroom.health and illustrates family caregiver interest in having a tool like familyroom.health available to prepare and guide them with daily family caregiving in the hospital.
Citations
Hetland, B., Grotts, E., Rubenfeld, E., Heusinkvelt, J., Krabbenhoft, L., Pozehl, B., Kupzyk, K., (2019). The impact of family caregiver psychophysiological characteristics on the caregiver role in the intensive care unit. American Journal of Respiratory and Critical Care Medicine, 199, A4361.
Hetland, B.D., McAndrew, N.S., Kupzyk, K.A., Krutsinger, D.C., Pozehl, B.J., Heusinkvelt, J.M., Camenzind, C.E. (2022). Family caregiver preferences and contributions related to patient care in the ICU. Western Journal of Nursing Research, 44(3), 214–226. https://doi.org/10.1177/01939459211062954
Hetland, B.D., McAndrew, N.S., Kupzyk, K.A., Krutsinger, D.C., Turnbull, A.E., Pozehl, B.J., Heusinkvelt, J.M. (2022). Relationships among demographic, clinical, and psychological factors associated with family caregiver readiness to participate in ICU care. Annals of the American Thoracic Society, 19(11): 1881-1891. https://doi.org/10.1513/AnnalsATS.202106-651OC
Studies Directly Supporting Familyroom.health
Systematic review of interventions that promote family caregiver involvement.
The creators of familyroom.health co-authored a systematic review evaluating interventions for family care activities in the ICU. Of 147 full text articles reviewed, only 19 (13%) used evidence-based interventions to support active family caregiver involvement in the ICU. Most interventions were of low to moderate quality and focused solely on the neonatal population. Few had been effectively translated to clinical practice. This work highlighted the lack of literature about active family engagement interventions like familyroom.health, especially regarding adult populations.
Citation
McAndrew, N., Costa, D., Fortney, C., Guttormson, J., Harding, E., Hetland, B., & Jerofke, T. (2022). Systematic review of family engagement interventions in adult, pediatric and neonatal intensive care units. Nursing in Critical Care, 27(3), 296–325. https://doi.org/10.1111/nicc.12564
Focus Group appraisal of the alpha version of familyroom.health (previously known as ICU-CARE).
We conducted formal focus groups with practicing ICU nurses (n= 5) and ICU family caregivers (n=3) to obtain user feedback of familyroom.health’s alpha version. Participants explored the technology, completed a checklist of tasks within the application, and then answered an 11-item Education Material Acceptability Instrument (EMAI), which evaluates clarity, accuracy, content, reading level, and technical quality. Item responses ranged from 1 (strongly disagree) to 5 (strongly agree), with a total score ranging from 11-55. The results of the EMAI showed overall acceptance by both family caregivers and nurses, with a mean score of 49 (SD=5.3). Participants highlighted the ease of use, the breadth of information important to family caregivers, and the appeal of the pictures, sounds, and descriptions throughout the platform.
Citation
Hetland, B., Bach, C., Grotts, E., Heusinkvelt, J., Pozehl, B., Rubenfeld, E., Wawers, A. (2021). Development of a mobile application to promote family caregiver engagement in the assessment and management of patient symptoms during mechanical ventilation in the intensive care unit (ICU). American Journal of Respiratory and Critical Care Medicine, 203, A1090.
Preliminary feasibility and acceptability of familyroom.health.
This randomized controlled pilot trial with 18 ICU caregiver/patient pairs tested our mobile application. This version provided family caregivers with a virtual ICU tour, education on nonpharmacologic symptom management, and a platform to record care contributions. The study found the app was feasible and acceptable – intervention group caregivers logged in daily 64% of the time, completed 71 symptom assessments, and performed 48 nonpharmacologic interventions that they rated as helpful 84% of the time. The app received high acceptability ratings (mean EMAI score of 50.3±4.4 out of 55), and participants using ICU-CARE reported significantly higher overall satisfaction with their ICU experience at 2-4 week follow-up compared to controls.
Citation
Hetland, B., Bach, C., Castner, J.P., Grotts, E., Happ, M.B., Heusinkvelt, J., Kupzyk, K., Wawers, A. (2023). A randomized clinical trial to test a mobile application that supports family caregiver participation in patient care in the intensive care unit. American Journal of Respiratory and Critical Care Medicine, 207, A2507.