Literature DB >> 33242761

A process-based approach to exploring the information behavior of informal caregivers of people living with dementia.

Rachel A Rutkowski1, Siddarth Ponnala1, Laura Younan1, Dustin T Weiler1, Andrea Gilmore Bykovskyi2, Nicole E Werner3.   

Abstract

INTRODUCTION AND
PURPOSE: Informal caregivers of persons living with dementia have significant unmet information needs that, if met, would better equip them to provide effective care. Despite the existence of health information technologies, websites, resources, and organizations dedicated to dementia caregiving, caregivers continue to report unmet information needs. Caregivers' continued unmet information needs suggest a misalignment between information products, and caregivers' information behavior-how caregivers generate, acquire, manage, use, communicate, and seek information. Researchers have developed conceptual models for understanding caregivers' information behavior, but these models are limited in that they are task-oriented, and they assume that caregivers' information needs will be met if they engage in information behavior. To address these limitations, the present study sought to explore caregivers' information behavior as a sociotechnical-systems-based process.
METHODS: We conduced semi-structured interviews with 30 self-identified caregivers to explore their daily experience of caregiving activities, including their information behavior. We applied a process-based conceptual framework that takes into account inputs, processes, outputs, and feedback mechanisms within a sociotechnical system to guide analysis. The process of interest was caregivers' information behavior as modeled by the information-seeking and communication model (ISCM). We conducted a deductive content analysis guided by the components of the ISCM. We then used team-based affinity diagramming to collapse and categorize the ISCM components into inputs, processes, outputs, and feedback.
RESULTS: We developed a conceptual model to depict caregivers' information behavior as a sociotechnical-systems-based process of inputs, processes, and outputs that feedback into the system. The conceptual model consisted of three inputs (i.e., information users, information providers, and information products), three information seeking and communication processes (i.e., information access, information interaction, and information assessment and processing), two outputs (i.e., utility and credibility), and feedback. DISCUSSION AND
CONCLUSION: Building on and addressing the gaps in previous information behavior models, our conceptual framework advances the previous task-level understandings of caregivers' information behavior into a comprehensive feedback-driven, process-level perspective consisting of context-based inputs, information seeking and communication processes, outputs, and feedback. A sociotechnical-systems-based understanding of caregivers' information behavior allows for misalignments between information providers and products, and caregivers' information behavior not only to be illuminated, but systematically addressed.
Copyright © 2020. Published by Elsevier B.V.

Entities:  

Keywords:  Dementia caregiving; Health information technology; Sociotechnical systems

Mesh:

Year:  2020        PMID: 33242761      PMCID: PMC8045462          DOI: 10.1016/j.ijmedinf.2020.104341

Source DB:  PubMed          Journal:  Int J Med Inform        ISSN: 1386-5056            Impact factor:   4.046


  37 in total

Review 1.  Systematic review of services providing information and/or advice to people with dementia and/or their caregivers.

Authors:  Anne Corbett; Jennifer Stevens; Dag Aarsland; Sarah Day; Esme Moniz-Cook; Robert Woods; Dawn Brooker; Clive Ballard
Journal:  Int J Geriatr Psychiatry       Date:  2011-10-28       Impact factor: 3.485

2.  Keeping Things in Balance: Family Experiences of Living With Alzheimer's Disease.

Authors:  Nuria Esandi; Mike Nolan; Cristina Alfaro; Ana Canga-Armayor
Journal:  Gerontologist       Date:  2018-03-19

3.  Three approaches to qualitative content analysis.

Authors:  Hsiu-Fang Hsieh; Sarah E Shannon
Journal:  Qual Health Res       Date:  2005-11

Review 4.  Understanding the needs of family caregivers of older adults dying with dementia.

Authors:  Genevieve N Thompson; Kerstin Roger
Journal:  Palliat Support Care       Date:  2013-06-18

5.  Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help.

Authors:  Lizzy M M Boots; Claire A G Wolfs; Frans R J Verhey; Gertrudis I J M Kempen; Marjolein E de Vugt
Journal:  Int Psychogeriatr       Date:  2015-01-08       Impact factor: 3.878

6.  Sample size in qualitative research.

Authors:  M Sandelowski
Journal:  Res Nurs Health       Date:  1995-04       Impact factor: 2.228

7.  Getting what they need when they need it. Identifying barriers to information needs of family caregivers to manage dementia-related behavioral symptoms.

Authors:  Nicole E Werner; Barbara Stanislawski; Katherine A Marx; Daphne C Watkins; Marissa Kobayashi; Helen Kales; Laura N Gitlin
Journal:  Appl Clin Inform       Date:  2017-02-22       Impact factor: 2.342

8.  From tasks to processes: the case for changing health information technology to improve health care.

Authors:  James M Walker; Pascale Carayon
Journal:  Health Aff (Millwood)       Date:  2009 Mar-Apr       Impact factor: 6.301

9.  Information needs and information seeking behaviour of people with dementia and their non-professional caregivers: a scoping review.

Authors:  Aijia Soong; Shu Ting Au; Bhone Myint Kyaw; Yin Leng Theng; Lorainne Tudor Car
Journal:  BMC Geriatr       Date:  2020-02-14       Impact factor: 3.921

Review 10.  Family caregivers of people with dementia.

Authors:  Henry Brodaty; Marika Donkin
Journal:  Dialogues Clin Neurosci       Date:  2009       Impact factor: 5.986

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  2 in total

1.  A human factors and ergonomics approach to conceptualizing care work among caregivers of people with dementia.

Authors:  Nicole E Werner; Rachel A Rutkowski; Richard J Holden; Siddarth Ponnala; Andrea Gilmore-Bykovskyi
Journal:  Appl Ergon       Date:  2022-06-08       Impact factor: 3.940

2.  Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation.

Authors:  Nicole E Werner; Janetta C Brown; Priya Loganathar; Richard J Holden
Journal:  JMIR Mhealth Uhealth       Date:  2022-03-29       Impact factor: 4.773

  2 in total

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