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

PLoS One. 2020 Dec 10;15(12):e0243502. doi: 10.1371/journal.pone.0243502. eCollection 2020.

Abstract

Purpose/objective: 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.

Research method/design: 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.

Results: 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).

Conclusions/implications: 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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Caregivers / psychology*
  • Cross-Sectional Studies
  • Female
  • Health Services Accessibility
  • Health Services Needs and Demand / organization & administration
  • Health Services Needs and Demand / statistics & numerical data*
  • Humans
  • Internet
  • Male
  • Middle Aged
  • Self Care
  • Social Support
  • Surveys and Questionnaires
  • Young Adult

Grants and funding

During the development of this work, AMJD was supported by a Research Training Program (RTP), University of Newcastle PhD Scholarship, https://www.newcastle.edu.au/ and Hunter Medical Research Institute/Emlyn and Jennie Thomas Postgraduate Medical Research Scholarship, https://hmri.org.au/. ALB is supported by an NHMRC Senior Research Fellowship (APP1135901), https://nhmrc.gov.au/. NJS was the recipient of a co-funded National Health and Medical Research Council/National Heart Foundation Career Development/Future Leader Fellowship (APPS1110629/100827), https://nhmrc.gov.au/; https://www.heartfoundation.org.au/. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.