Abstract
Health Co-Inquiry is a process whereby stakeholders in management of chronic health (or mental health) conditions collaborate, with efforts toward stakeholder activation, person-centeredness, evidence-based practice, and integrated care. With rapid growth of Internet use by the general population in the new millennium, persons with chronic conditions and their caregivers, friends, family, and health providers may be using the Internet more in order to seek information, share advice, and give or find support and services. Thus, the Internet can provide an important avenue for Health Co-Inquiry and for researchers who want to know about stakeholder experiences. A fundamental aim of the current authors’ “Health Co-Inquiry Project” is to better understand stakeholder experiences in chronic conditions through their online narratives. Here we report, specifically, about our development of a Bifurcated Method for analyzing narratives online. It involves: (1) thematic analysis of narratives from publicly available blogs, forums, and other websites related to chronic health conditions, and (2) creation of a computer program that “crawls” the URLs to locate and count the frequencies of general health and condition-specific terms and provide pictorial representations of the relative frequencies of words on a web page. The Bifurcated Method is novel in social research, using online forums as data, evaluating them thematically, and crawling them with a computer program that quantitizes specified search terms. One benefit is comparison of results from the two sub-parts to look for apparently convergent and divergent information across the two prongs of analysis. Safeguards include removing stakeholder monikers from quoted narratives, and striving to use only publicly available URLs. The present report provides details about the Bifurcated Method and considers limitations of the approach for those who might use it. Specific results for each health condition from the larger Health Co-Inquiry Project are provided elsewhere.
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Funding
This study is supported in part through an institutional grant from The National Science Foundation to Malone University. CC-NIE Award Number #1541342. The current authors received a grant sub-award from it. Special thanks go to M. Adam Klemman, Jim Shaffer, Jason Courter, and Shawn Campbell (recipients of the institutional grant), who utilized it to help enhance our data collection. Additional thanks go to Camden Baucke, J. “Harley” Ferrel, Tess Schmucker, Matthew Beechy, Rosa Cleaver, Tyler Bowman, Kathryn Bash, and Evan Zorn, for their assistance searching for URLs and composing dictionaries for specific health conditions. Special thanks go to Rosella Groves for graphics and to the editors and anonymous reviewers for their helpful comments.
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The current research was supported by a grant sub-award via an institutional grant from the National Science Foundation, CC-NIE Award Number #1541342. Additional information about the grant can be found in the acknowledgements that accompany this article. The study was reviewed and approved through an expedited review procedure via our institution’s IRB. The study protocol is compliant with the 1964 Declaration of Helsinki and later addenda, the Belmont Report, and Title 45 Part 46 of the US Code of Federal Regulations.
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The current study uses online posts that are publicly available. The data are artifacts, and no contact with live participants occurred during data collection. As such, informed consent was not sought. However, as a research safeguard, all online users whose posts were used as data were assigned random participant numbers. Thus, no online monikers are provided in our published reports, and this helps to create a buffer between readers of our published reports and the online posters.
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Appendices
Appendix 1: Condition-Specific Dictionary for Alzheimer’s Disease*
Alzheimer//vascular damage //temporal cortex //amyloid precursor protein//synaptopathy //central cholinergic //peripheral cholinergic //cholinergic neuron //semantic dementia //glycogen synthase //brain aging //DYRK1A kinase //DYRK1A//neuron cytoskeleton //amyloid-beta aggregation //Aβ//b-amyloid oligomer toxicity //receptor-mediated β-amyloid//β-amyloid oligomer //mutant β-amyloid fibrils//automatic memory processing //automatic processing//onset//neuropsychological //dementia //disease //neurofibrillary tangle //NFT//cognitive deficit //impairment //beta-secretase //BACE1//gene discovery //novel loci//TARDBP mutation //TARDBP//TDP-43//amyloid-β//neurovascular defect//hyperphosphorylation of TAU//neurofibrillary //TAU triage //frontotemporal dementia //metal theory //cerebrospinal fluid biomarker//neurodegeneration//vascular brain injury //prevention //assessment //treatment//psychosocial //diffusion tensor//diffusion tensor imaging//biomarker//diagnosis //brain structural imaging //cognitive impairment //white matter //gray matter //neuronal dysfunction //18F-AV-45//florbetapir//Amyvid//18F//Pittstburgh compound B//position emission//dietary factor//LEARN model //latent early-life associated regulation//intracellular amyloid β-protein //apomorphine //Aβ42 aggregation //prefrontal cortex//reversal learning impairment //OFβAPP//PrPc//α-secretase //metalloproteinase-mediated //metalloproteinase//metalloprotease//app α-secretase cleavage //Β-peptide-mediated //neuronal death //gene regulation //BACE1//CREB//Fe65//APBB1//YY1//y-secretase complex assembly //pro-inflammatory cytokine//modulate glial expression //apolipoprotein E protein //apolipoprotein//lipoprotein receptor //tau-induced neurodegeneration //tauopathy//tauopathies//neuropsychiatric symptom//vascular dementia //fatty aspirin //amyloid-β oligomer //human body fluid //early diagnosis//therapy monitoring //visual impairment //clinical pathophysiological //mitochondrial hapgroups //18F-FDG-PET imaging //artificial neural network //milestone//difficulties //difficulty//memory processing //age of onset //neuropsychological feature //significant neuronal loss//toxic effect//spatial pattern //late-onset sporadic Alzheimer’s disease //FAD//familial//altered state//brain function//vegetative state //mild cognitive impairment//mitochondrial pathology //calmodulin //Transgenic Model //COX-2 inhibitor //copper studies //copper chelator//anti-Alzheimer //behavioral disturbance//immunotherapy //cerebral amyloid angiopathy//antidepressant//cystatin//cysteine//neurogeneration //acetylcholinesterase-inhibitory potential //acetylcholinesterase//quercetin //AZD-103//NSAID//symptom//sign//outlook //memory test //blood test //genetic test //brain scan //improving communication //memory aid //losing things //non-recognition //hallucination//restless //agitation //sexual behavior //emotional support //loss //despair//guilt //nursing home //financial capacity //psychological treatment //drug trial//drug//plaque//tau//living brain //new technology //genetic//vascular disease //memory loss//insulin resistance //inflammation //cognitive reserve //drug treatment//gene discovery //neurovascular defect//hyperphosphorylation of TAU//neurofibrillary degeneration //TAU triage //frontotemporal dementia//metal theory //vascular brain injury//risk factor//risk //preventative //hypertension //medicine//brain food //nutrition //body upkeep //physical exercise //cognitive engagement //social network//stage//early onset//late onset.
* Due to the length of the list, we have used // to separate terms in order to conserve space.
Appendix 2: List of Ten Resource Books about Alzheimer’s Disease Used to Make the Condition-Specific Dictionary
Barak, Y. (2013) Preventing Alzheimer’s disease: Personal responsibility. New York, NY: Nova Science Publishers, Inc.
Barrack, S. (2013) Neuroimaging biomarkers in Alzheimers disease. [place of publication not identified]: iMedPub.
Boyd, M. R., (2010) Alzheimer’s disease diagnosis & treatment. Hauppauge, NY: Nova Science Publishers, Inc.
Cayton, H., Graham, N., & Warner, J. (2008). Alzheimer’s and other dementias: Answers at your Fingertips. London, UK: Class Publishing.
Derreumaux, P., (2012), Alzheimer’s disease & insights into low molecular weight and cytotoxic aggregates from invitro & computer experiments- Molecular basis of amyloid-beta protein aggregation & fibril formation. Singapore: Imperial College Press.
Hoffman, J., Golant, S. K., & Froemke, S. (2009). The Alzheimer’s Project: Momentum in science. New York, NY: Public Affairs.
Lahiri, D., K. (Ed.). (2013) Advances in Alzheimer’s research (Vol. 1). Sharjah, UAE: Bentham Science Publishers.
Perry, G., Zhu, X., Smith, M.A., Sorensen, A., & Avila, J. (2009) Alzheimer’s disease: Advances for a new century. Amsterdam, NL: IOS Press.
Ronson, C. E. (2011) Alzheimer’s diagnosis. New York, NY: Nova Science Publishers. Inc.
Sun, M. (2013) Alzheimer’s disease research compendium. Hauppauge, NY: Nova Science Publishers, Inc.
Appendix 3: Seed URLs for Alzheimer’s Disease
http://patient.info/forums/discuss/browse/alzheimer-s-disease-67
https://www.alzconnected.org/discussion.aspx
http://www.healingwell.com/community/?f=8
http://www.psychforums.com/alzheimer/
http://www.dementiaforum.org/discuss/forum/
http://ehealthforum.com/health/alzheimers.html
http://www.medhelp.org/forums/Alzheimers-Disease/show/379
http://www.healthboards.com/boards/alzheimers-disease-dementia/
https://forum.alzheimers.org.uk/
https://www.patientslikeme.com/conditions/114-alzheimer-s-disease
http://www.topix.com/forum/health/alzheimers-disease
http://www.worldhealth.net/forum/show/43/alzheimer-s-disease/
http://alzinfo.org/alztalk/forums/
http://www.nhs.uk/Conditions/Alzheimers-disease/Pages/community.aspx
http://www.curezone.org/forums/f.asp?f=21
https://www.diseasemaps.org/alzheimer-disease/forum/
http://www.50plusforum.com/forums/alzheimers-disease/
https://forum.grasscity.com/threads/thc-vs-a-d.1413051/
Ask
https://www.facebook.com/DementiaAlzheimersCaregiversForum/
http://caregiveraction.org/forum
https://www.caring.com/alzheimers-support
http://www.city-data.com/forum/caregiving/
http://alzheimers.proboards.com/
http://thealzheimerspouse.com/vanillaforum/
https://www.depend.com/caring-for-others/caregivers-forum
http://www.helpwithdementia.org.au/forums/
https://www.theguardian.com/lifeandstyle/2011/nov/21/picks-disease-early-onset-dementia
http://www.psychforums.com/alzheimer/topic21706.html
http://www.dementiajourneys.com/wp/forums/forum/forum/
https://www.enotalone.com/forum/showthread.php?t=388193\.
https://www.agingcare.com/alzheimers-dementia/questions?page=1
http://www.medschat.com/Discuss/Alzheimers-Dementia/
http://abchomeopathy.com/forum2.php/33884/
http://www.alz.org/living_with_alzheimers_8510.asp
http://www.usagainstalzheimers.org/story-sharing/people-alzheimers-0
http://activitydirector.net/forum/forum/13-activities-alzheimers-and-dementia/#.
Bing
https://able2know.org/forum/alzheimers/
https://www.mumsnet.com/Talk/dementia
http://forums.digitalspy.co.uk/showthread.php?t=2115235&page=2
https://www.alzu.org/forum/list.php?6
https://www.mentalhealthforum.net/forum/forum324.html
www.mdjunction.com/forums/alzheimers-disease-discussions/alzheimers-resources
https://destee.com/threads/alzheimers.54993/
http://forums.moneysavingexpert.com/showthread.php?t=5237647
http://exchanges.webmd.com/alzheimers-exchange/forum/index
https://www.dementiacarecentral.com/forum/
http://www.caregiveraction.org/forum/
https://www.420magazine.com/forums/alzheimer-s-disease/
http://forums.catholic.com/showthread.php?t=1021641 http://forum.forteantimes.com/index.php?threads/alzheimers.20083/page-2
http://www.womanandhome.com/forums/threads/76438-Poem-An-Alzheimers-Request http://www.aplaceformom.com/blog/communication-with-a-loved-one-with-dementia/ https://healthunlocked.com/alzheimer-support
http://www.curezone.org/forums/search.asp?q=alzheimers+disease&action=Search
Yahoo
https://www.reddit.com/r/Alzheimers/
http://www.helpforalzheimersfamilies.com/dementia-support-network/your-questions-answered/
http://www.caregiverstress.com/2011/10/is-there-a-web-site-where-i-can-chat-with-other-caregivers/
http://mikegamble.websitetoolbox.com/post/alzheimersdementia-chat-room-2285763 http://www.helpforalzheimersfamilies.com/alzheimers-care-training/live-chat-reflections/
http://www.dslreports.com/forum/r26953354-Alzheimers-Disease
http://www.abc-directory.com/site/990026
http://www.experienceproject.com/groups/Have-A-Father-With-Alzheimers-Disease/5298
http://www.healthinforum.org/Conditions-and-Diseases-Neurological-Disorders-cat-92-3.html
http://www.care2.com/greenliving/7-stages-of-alzheimers-disease.html
Appendix 4
Screen shot with sample word cloud for migraine
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Seifert, L.S., Kaelber, K., Flaherty, K. et al. Using online resources in health co-inquiry: A bifurcated method for analyzing stakeholder narratives. Curr Psychol 38, 1772–1788 (2019). https://doi.org/10.1007/s12144-019-00474-9
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DOI: https://doi.org/10.1007/s12144-019-00474-9