Rural Family Caregivers’ Discoveries Following a Person-in-Context Dementia Simulation

Authors

  • Candace Currie Harrington University of Louisville
  • Sonya R. Hardin University of Louisville School of Nursing
  • Pamela Z. Cacchione University of Pennsylvania School of Nursing
  • Donna W. Roberson East Carolina University College of Nursing
  • Janice A. Neil East Carolina University College of Nursing

Abstract

Purpose: The purpose of this qualitative study was to discover rural family dementia caregivers’ lived experience in a virtual dementia simulation and how it affected their understanding of their family members’ daily challenges. To our knowledge, this study is the first to document its impact and value in this understudied, under-reported, and under-represented population.

Sample: A volunteer sample of 10 rural family caregivers of persons with AD/ADRD following participation in a rural eastern North Carolina community delivered AD/ADRD simulation.

Method: In-depth interviews lasting 45-110 minutes were conducted. The Utrecht phenomenology analytic method was used to sort, analyze, and interpret data. Richness of data drove the sample size.

Results: The volunteer participants were female familial caregivers ages ranged from 49 to 81. Their care recipients’ ages ranged from 62 to 93 years. Eighty percent of the caregivers provided care for their loved ones 6-7 days a week. Only one caregiver had formal (paid) assistance for care provision. The themes Now I Understand, Opened My Eyes, and Making Changes emerged from the participants' statements.

Conclusion: Rural family caregivers found the AD/ADRD simulation profoundly impacted their perceptions of AD/ADRD and expressed new understandings and eye-opening epiphanies about their family members’ daily challenges with dementia and their planned changes to improve their loved ones’ quality of life.  The AD/ADRD simulated experience provided participants with a unique opportunity for self-discovery about their loved ones’ daily challenges. This original study addresses the paucity of literature and research about AD/ADRD simulations for rural caregivers of persons with AD/ADRD. This study further demonstrates the value of AD/ADRD simulation to rural nursing practice and science. These findings may prompt rural health nurses to encourage family caregiver participation in person-in-context simulations to enhance their understanding of the loved ones’ lived experience.

Keywords: interpretative thematic analysis, dementia simulation, family caregiver, qualitative research, neurocognitive syndrome

DOI: https://doi.org/10.14574/ojrnhc.v22i1.695

Author Biographies

Candace Currie Harrington, University of Louisville

PhD, DNP, APRN, AGPCNP-BC, CNE

Assistant Professor and the Trilogy, Signature, and Elmcroft Gerontology Nurse Practitioner Professor,  University of Louisville School of Nursing in Louisville, KY.

Sonya R. Hardin, University of Louisville School of Nursing

PhD, MBA, MHA, APRN, CCRN, NP-C, FAAN

Professor and Dean of the University of Louisville School of Nursing 

Pamela Z. Cacchione, University of Pennsylvania School of Nursing

PhD, CRNP, GNP-BC, FSGA, FAAN 

Professor of Geropsychiatric Nursing, Ralston Endowed Term Chair in Gerontological Nursing at the University of Pennsylvania, Nurse Scientist, Penn Presbyterian Medical Center, Senior Fellow, Leonard Davis Institute of Health Care Economics University of Pennsylvania.

Donna W. Roberson, East Carolina University College of Nursing

 PhD, RN, FNP-BC

Associate Professor at East Carolina University College of Nursing in Greenville, NC.

Janice A. Neil, East Carolina University College of Nursing

PhD, RN, CNE

Associate Professor Emerita at East Carolina University College of Nursing in Greenville, NC.

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Published

2022-05-16