Family caregivers (FCs) of persons institutionalized at geriatric facilities present significant unmet communication needs regarding receiving regular updates about their loved one’s condition and having available healthcare professionals (HPs) to approach when needed. We developed and tested a mobile-app for staff-family communication with both parties having active roles in app planning to tailor it to their needs and abilities. The app includes a daily-update module for FCs and a chat option for FCs and HPs. App use was piloted at one geriatric-medical-center for 15 months (unit-level randomization resulted in one complex-care and one assisted-ventilation unit in each group- intervention and control) and one single-unit nursing-home for three months. Personal interviews were conducted with 55 FCs (28 from intervention-group and 27 FCs from control-group) before-and-after app use (with mean duration of use 1.6[S.D.=.6] months. Most participants were women and the children of the patients; their mean age was 55.9 years (S.D.=12.4). Repeated-measures Analysis-of-Variance for the end-of-life communication sub-scale on the Quality-of-communication questionnaire yielded a main effect for time (F(1,53)=8.31, p=.006) with both groups’ ratings increasing over time and an interaction effect (F(1,53)=4.78, p=.033) with a greater increase for intervention-group compared to control-group. Intervention-group participants rated the app as convenient to use. Qualitative data revealed that FCs perceived app use as improving quality of communication with the HPs who used it and improving their own well-being. The app offers a feasible and an effective mode of communication that incorporates technology in daily communication between FCs and HPs while addressing FCs’ unmet needs.
Family caregivers (FCs) of institutionalized noncommunicative older persons reported multiple unmet communication needs focusing on the need to receive reliable and regular updates on the patient’s condition. We have developed a mobile app for improving communication between FCs and healthcare professionals (HPs), based on 152 interviews with FCs and 13 discussion groups with HPs from four Israeli geriatric facilities. Both parties participated in app planning, tailoring it to their needs and abilities. App use implementation encountered major obstacles including the bureaucratic process concerning signing contracts between the university and software development firms, which hindered the process for a full year; data security department required disproportionate security levels that interfered with user experience and delayed the development process; the study’s definition varied across different ethics/Helsinki committees (Institutional Review Boards; IRBs), which led to different demands, e.g., insurance for medical clinical trials although no drugs or medical device were involved; lack of cooperation by mid-level staff members despite the institutional adoption of the app project; low utilization by HPs resulted in FCs not receiving timely responses. Despite these and other obstacles, we tested app use for 15 months in one facility in a pre-post-design with intervention and control groups, and we have since begun testing it in another facility. FCs who had used the app had positive feedback and wished to continue using it. App use optimization requires implementation planning, assimilating changes in each facility’s work procedures and HP’s engagement and motivation and thus depends on institutional procedures and politics.
Current literature on end-of-life communication (EOLC) between family caregivers (FCs) and health professionals (HPs) lacks reference to FCs’ communication needs and primarily addresses its formal aspects of communication such as offering advance directives. We explored FC’s communication needs and developed a questionnaire to evaluate the quality of EOLC. Interviews were conducted with 152 Israeli FCs of patients from nursing care, skilled nursing care, assisted ventilation, and dementia units within four facilities (nursing homes and geriatric medical centers). Most participants were women (61%), married (78%), and were children of the patients (77%), with a mean age of 57.5 (S.D.=12.01, range: 29-88). Qualitative analysis yielded several themes: FCs’ concerns about the availability and accessibility of all types of HPs, information needs (e.g., the need for regular updates initiated by HPs), FCs’ need for emotional support, and difficulties stemming from differences in language and culture. The need for improved communication in these spheres extended to all stages of hospitalization. Based on these needs, we developed a questionnaire to evaluate the quality of EOLC. Reliability was measured in a different sample, and ranged from Cronbach alpha of .916 (41 items; 41 FCs) to .937 (41 items with discrimination index greater than .3; 78 FCs). Factor analysis yielded factors similar to the themes that emerged from the qualitative analysis. The findings highlight aspects of EOLC between FCs and HPs which should be addressed and improved. Thus, this study is a crucial first step toward improving the quality of care at the end-of-life.
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