An online survey of informal caregivers' unmet needs and associated factors

• Published in: PloS one Vol. 15; no. 12; p. e0243502
• Main Authors: Denham, Alexandra M J, Wynne, Olivia, Baker, Amanda L, Spratt, Neil J, Turner, Alyna, Magin, Parker, Palazzi, Kerrin, Bonevski, Billie
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 10.12.2020; Public Library of Science (PLoS)
• Subjects: Accessibility; Adolescent; Adult; Advertising; Age; Cancer; Caregivers; Caregivers - psychology; Computer and Information Sciences; Cross-Sectional Studies; Dementia; Demographic aspects; Domains; Female; Frailty; Gender; Health aspects; Health Services Accessibility; Health Services Needs and Demand - organization & administration; Health Services Needs and Demand - statistics & numerical data; High income; Humans; Internet; Male; Medical research; Medicine; Medicine and Health Sciences; Middle Aged; Polls & surveys; Public health; Regression analysis; Research and Analysis Methods; Self Care; Social networks; Social Sciences; Social Support; Stroke; Support services; Surveys; Surveys and Questionnaires; Traumatic brain injury; Young Adult; Australia; Canada; United States > US
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0243502

The purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers. An online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with…", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs. Overall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18-45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05). Caregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.