ABSTRACT
BACKGROUND: Managing the heterogeneity and unpredictability of multiple sclerosis (MS) symptoms can be difficult for MS care partners. This study aimed to characterize the symptoms managed by MS care partners, recognize relationships between symptom management difficulty and other aspects of the caregiving role, and identify supplemental sources of care-giving support used by care partners. METHODS: A Canadian cohort of MS care partners completed an online survey capturing care-partner characteristics, care-recipient symptoms, care-partner difficulty with managing symptoms, and sources of caregiving assistance. Descriptive analysis, analysis of variance, and χ2 tests were used to compare differences in care-partner characteristics by symptom management difficulty groups, defined as low (<4 symptoms), medium (5-7 symptoms), and high difficulty (>7 symptoms). RESULTS: Care partners to individuals with MS (N = 475) reported a median of 8 symptoms (IQR = 4) experienced by their care-recipients. The most frequent symptoms reported were fatigue (89.1%), weakness (87.2%), and depression (81.9%). Care partners reported a median of 6 (IQR = 5) symptoms being somewhat or very difficult to manage. Balance or mobility impairments (20.3%), depression (14.3%), and vision difficulties (13.1%) were most frequently reported as very difficult to manage. Assisting with activities of daily living (P < .001) and time spent caregiving (P = .035) varied significantly between symptom management difficulty groups. Additional help available was reported by 77.5%, 17.8%, and 41.6% of care partners reporting low, medium, and high symptom management difficulty, respectively (P < .001). CONCLUSIONS: Care partners of individuals with MS report difficulty in managing multiple, variable symptoms and often have no additional help. These findings suggest that MS care partners experience difficulty managing many diverse symptoms and may benefit from additional support.
ABSTRACT
OBJECTIVE: The objective of this scoping review is to map the literature on how usability is considered during the design and/or evaluation of computer-based digital health technologies for family caregivers of persons with chronic progressive conditions. INTRODUCTION: Computer-based digital health technologies offer convenient alternatives for delivering interventions to caregivers of people with chronic progressive conditions. Usability is a critical component of good practice in developing and implementing health and social care technologies; however, we need to determine whether usability is incorporated in the design and/or evaluation of computer-based digital health technologies for caregivers of people with chronic progressive conditions. Within this context, a broad overview of the existing literature on usability in computer-based digital health technologies is needed. INCLUSION CRITERIA: We will include studies published from 2012 to the present that describe usability characteristics of computer-based digital health technologies targeting adult (≥18 years old) family caregivers of people with chronic progressive conditions, regardless of study design or setting. METHODS: We will use the JBI methodology for scoping reviews. We will conduct searches of MEDLINE (Ovid), PsycINFO (Ovid), CINAHL (EBSCOhost), and Web of Science Core Collection to capture eligible studies. After the results are deduplicated, 2 independent reviewers will assess each study for eligibility and extract data from the included studies. Conflicts will be resolved through discussion or with a third reviewer. Data analysis will use a textual narrative synthesis approach. REVIEW REGISTRATION: Open Science Framework osf.io/w4vk5.
