The Impact of Unmet Communication and Education Needs on Neurosurgical Patient and Caregiver Experiences of Care: A Qualitative Exploratory Analysis

James D Harrison; Gregory Seymann; Sarah Imershein; Alpesh Amin; Nasim Afsarmanesh; Jeffrey Uppington; Anna Aledia; Sarah Pretanvil; Bridget Wilson; Josefina Wong; Jennifer Varma; James Boggan; Frank P K Hsu; Bob Carter; Neil Martin; Mitchel Berger; Catherine Y Lau

doi:10.1016/j.wneu.2018.11.094

The Impact of Unmet Communication and Education Needs on Neurosurgical Patient and Caregiver Experiences of Care: A Qualitative Exploratory Analysis

World Neurosurg. 2019 Feb:122:e1528-e1535. doi: 10.1016/j.wneu.2018.11.094. Epub 2018 Nov 22.

Authors

James D Harrison¹, Gregory Seymann², Sarah Imershein³, Alpesh Amin⁴, Nasim Afsarmanesh⁵, Jeffrey Uppington⁶, Anna Aledia⁴, Sarah Pretanvil², Bridget Wilson⁷, Josefina Wong⁸, Jennifer Varma⁹, James Boggan¹⁰, Frank P K Hsu¹¹, Bob Carter¹², Neil Martin¹³, Mitchel Berger¹⁴, Catherine Y Lau³

Affiliations

¹ Department of Medicine, University of California San Francisco, San Francisco, California, USA. Electronic address: james.harrison@ucsf.edu.
² Department of Medicine, University of California San Diego, San Diego, California, USA.
³ Department of Medicine, University of California San Francisco, San Francisco, California, USA.
⁴ Department of Medicine, University of California Irvine, Irvine, California, USA.
⁵ University of California Irvine Health, Irvine, California, USA.
⁶ Department of Anesthesia, University of California Davis, Sacramento, California, USA.
⁷ Department of Obstetrics and Gynecology, University of California Davis, Sacramento, California, USA.
⁸ CTSC Clinical Trials Center, UC Davis Health, Sacramento, California, USA.
⁹ UCLA Neurosurgery, University of California Los Angeles, Los Angeles, California, USA.
¹⁰ Department of Neurological Surgery, University of California Davis, Sacramento, California, USA.
¹¹ Departments of Neurological Surgery and Physical Medicine & Rehabilitation, University of California Irvine, Irvine, California, USA.
¹² Neurosurgery Service, Massachusetts General Hospital, Boston, Massachusetts, USA.
¹³ Neuroscience Institute, Geisinger, Danville, Pennsylvania, USA.
¹⁴ Department of Neurological Surgery, University of California San Francisco, San Francisco, California, USA.

PMID: 30471444
DOI: 10.1016/j.wneu.2018.11.094

Abstract

Objective: To describe neurosurgical patient and caregiver perceptions of provider communication, the impact of patient education, and their understanding of information given to them throughout the neurosurgical care trajectory.

Methods: We organized focus groups composed of patients who had been hospitalized on the neurosurgical service at 5 urban academic tertiary referral hospitals within a large university health system, along with the patients' caregivers. During focus groups, we used semistructured questions to answer the study questions. Content analysis was used to analyze the data.

Results: Forty-three patients and caregivers took part in 5 focus groups. In total we identified 12 coding categories (or topics) that were associated with patient and family information needs. Despite the fact all patients were receiving care within the same health system, often with the same care team and clinical environments, their experiences often could not have been more different. We found stark variations in how patients and caregivers described the quality of communication and patient education they received that affected their satisfaction. Satisfied patients and caregivers generally felt well informed and reported good understanding of the clinical care plan throughout the perioperative course, whereas dissatisfied patients struggled with unanswered questions, unmet information needs, and a sense of confusion throughout their care experience.

Conclusions: Our study describes several unmet needs, finds inconsistencies in how information is delivered and a lack of patient-centered and caregiver-centered approaches to communication. Neurosurgery groups should identify unmet needs at their institution and implement strategies and interventions to improve the patient and caregiver experience.

Keywords: Communication; Comprehension; Needs assessment; Neurosurgery; Patient education; Qualitative research.

MeSH terms

Caregivers / education*
Caregivers / psychology*
Comprehension
Female
Focus Groups
Health Communication*
Hospitalization
Humans
Interviews as Topic
Male
Needs Assessment
Neurosurgical Procedures / education
Neurosurgical Procedures / psychology*
Patient Education as Topic*
Patient Satisfaction*
Patient-Centered Care
Qualitative Research
Quality of Health Care