1 Introduction
2 Methods
Search word 1 | Search word 2 | Search word 3 |
---|---|---|
digital* | “multiple sclerosis” | informal |
ehealth | “ms-disease” | famil* |
“e-health” | spous* | |
mhealth | partner* | |
“mobile health” | couple* | |
telemedicine | child* | |
telemedicine | parent* | |
telerehabilitation | friend* | |
“health informatics” | relative* | |
caregiv* |
3 Results
3.1 Characteristics of Included Studies
Authors | Summary | Participants |
---|---|---|
Abbatemarco., Hartman, McGinley, Bermel, Boissy, Chizmadia, Sullivan & Rensel [24] | Evaluation of satisfaction with the online clinic experience of pwMS. The physical clinic experience transferred online due to COVID. Survey of satisfaction physical vs digital | PwMS. Family members sometimes accompanied pwMS in the video meeting with HCPa |
Bergamaschi, Tronconi, Bosone, Mastretti, Jommi, Bassano, Turrini, Benati, Volpe, Franzini, Allodi & Mallucci [25] | Development and evaluation of a protocol for managing pwMS by HCPa. Virtual appointment, usability assessed by survey. F&F helped with cognitive assessment | 25 pwMS, their carers accompanied in all virtual visits |
Bove, Garcha, Bevan, Crabtree-Hartman, Green & Gelfand [18] | Evaluation of video appointments for understanding if they reduced provider and pwMS burden | 150 People with MS or other neuroinflammatory disorders. 27% had a companion (usually a spouse or partner) with them |
Claflin, Campbell, Doherty, Farrow, Bessing & Taylor [23] | Evaluation of a MOOCb education program about participant engagement and measures of satisfaction, appropriateness, and burden | 3518 participants, 1549 of whom completed the feedback survey: 862 formal or informal carers, 928 pwMS, 664 F&F |
Claflin, Mainsbridge, Campbell, Klekociuk & Taylor [26] | Evaluation of the impact of an online course on the participants’ behavior regarding eating and exercising habits of pwMS. Survey of self-reported behavior change after education | 560 participants: 213 pwMS, 144 carers |
Haase, Voigt, Scholz, Schlieter, Benedict, Susky, Dillenseger & Ziemssen [22] | Survey on the use of information technology, barriers, needs, requirements, and adopting technology solutions for MS | 185 pwMS, 25 informal carers, 24 Healthcare professionals |
Halstead, Leavitt, Fiore & Mueser [21] | A feasibility study of an online resilience education program for pwMS and their family | 62 participants, 31 dyads: 28 pwMS and partners, 3 parent-child dyads |
Harder, Hernandez, Hague, Neumann, McCreary, Cullum & Greenberg [19] | Comparison between the home-based pediatric videoconference and in-person neuropsychology assessment. Evaluation of user satisfaction and validity | 95 participants, ages 9–20 years, and their carers. 24% have MS or clinically isolated syndrome |
Octavia & Coninx [15] | Evaluation of the impact of adaptive, personalized, collaborative games for rehabilitation | 9 pwMS and therapist. A game was designed to play with for example family members, but it was not studied with family members |
Palacios-Ceña, Ortiz-Gutiérrez, Buesa-Estellez, Galán-Del-Río, Cachón-Pérez, MartÍnez-Piedrola, Velarde-García & Cano-De-La-Cuerda [16] | Exploring the experience of pwMS on the virtual home exercise program and its impact. Video games were used as a rehabilitation tool | 24pwMS received treatment using Kinect, control group (25pwMS) received physiotherapy twice a week. Family and friends had joined Kinect games with pwMS |
Roth, Minden, Maloni, Miles & Wallin [27] | Interviewing participants to understand their perspectives about telemedicine for provision of MS care | 20pwMS, 15 HCPa, 15 payers and policy experts (from health insurance companies) |
Schleimer, Pearce, Barnecut, Rowles, Lizee, Klein, Block, Santaniello, Renschen, Gomez, Keshavan, Gelfand, Henry, Hauser & Bove [20] | Expanding the design of a medical digital platform to have an interface for pwMS, where they can monitor and understand their health condition to make meaningful decisions. Designing and testing the solution | Phase I: 6 clinicians, 12 pwMS (with family, friend, carer), industry and advocacy experts. Phase II: 10 pwMS, MS support group. Phase III: MS support group, 15 pwMS advocacy group for feedback & 24 pwMS for testing |
Sillence, Hardy, Briggs & Harris [17] | Study of F&F impressions and needs of online support and information forums | 20 F&F of pwMS. In all but one case pwMS was their spouse |
Toscano, Patti, Grazia Chisari, Arena, Finocchiaro, Schillaci & Zappia [28] | Evaluation of reliability and satisfaction of televisits | 76 pwMS, 23 F&F |
3.2 Role of Family and Friends of PwMS in Included Studies
Yes | No | |
---|---|---|
F&F were mentioned in the methods section of the research | ||
F&F were participants in the study | ||
F&F accompanied pwMS during the research | ||
F&F appeared in the results or discussion section of the research |