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Patient and Family Engagement in Long Term Care

Created By: Lorri Zipperer, Cybrarian, AHRQ PSNet Team
Date Created: December 19, 2024
Last Updated: March 15, 2025

Description
Long term care presents challenges that affect patient and family engagement in safety improvement and advocacy. This curated library covers distinct efforts, gaps and core resources that discuss reasons and opportunities in long term care for increased involvement from residents, families and friends in personal and organizational safety.
Library Organization
Custom - This library is organized by custom section header names.
Foundations (7)
Deb Bakerjian PhD, APRN, FAAN, FAANP, FGSA |

A large and growing number of Americans require care in skilled nursing facilities, inpatient rehabilitation facilities, or long-term acute care hospitals, often after an acute hospitalization. Data indicates that... Read More

Beverley H. Johnson, FAAN, Merton Lee, PharmD, PhD, Sarah E. Mossburg, RN, PhD |

This piece discusses how family presence and participation in healthcare at all levels can improve patient safety as well as how the COVID-19 pandemic affected partnership with patients and families, ultimately highlighting the critical importance of family presence... Read More

This piece describes patient safety risks when caring for frail older patients and summarizes potential approaches for clinicians to minimize this risk.

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Centers for Medicare and Medicaid Services.

The Centers for Medicare & Medicaid Services (CMS) support transparency through the provision of publicly available information on the quality of health care service in the United States. This portal enables access to comparative... Read More

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All Library Content (17)
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Juhl MH, Soerensen AL, Vardinghus-Nielsen H, et al. JMIR Form Res. 2024;8:e54977.
Residents of nursing homes (NH) often require multiple medications to treat their chronic conditions. This article describes the co-creation of an intervention to improve medication safety in Danish nursing homes. Unlicensed healthcare personnel who administer the medication (social and healthcare assistants and helpers) and relatives representing NH residents contributed to the design of the intervention. The Safe Medication in Nursing Home Residents (SAME) intervention includes materials to define key roles and responsibilities for healthcare professionals and "medication safety reflexive spaces," a series of facilitated sessions.
Dunsmore ME, Watharow A, Schneider J. J Adv Nurs. 2024;Epub Mar 22.
Patient inability to see and hear diminishes the effectiveness of their care experience, yet these conditions are not always readily evident to clinicians. This commentary highlights the need for increased attention to dual sensory impairment as a deterrent to safe, effective engagement of elderly patients in their care.

Medical errors (all errors in medicine), harmful errors (medical errors that specifically lead to patient harm), and adverse events (harms due to medical care) are leading causes of death and harm in patients in the hospital setting.1,2 Communication failures are a common root cause of sentinel events, which are the most serious harmful errors.3 Minimal research has investigated whether efforts to reduce communication failures across healthcare providers, patients, and families could improve patient safety.

Jeffs L, Kuluski K, Flintoft V, et al. J Nurs Care Qual. 2024;39(3):226-231.
Patients provide a unique insight on patient safety. In this study, patients and care partners report that feeling safe or unsafe involves more than only physical safety. They highlight the role of psychological safety, such as feeling listened to and having trust in the provider.
Beverley H. Johnson, FAAN, Merton Lee, PharmD, PhD, Sarah E. Mossburg, RN, PhD |

This piece discusses how family presence and participation in healthcare at all levels can improve patient safety as well as how the COVID-19 pandemic affected partnership with patients and families, ultimately highlighting the critical importance of family presence and participation.

Beverley H. Johnson

Beverley H. Johnson is the president and CEO of the Institute for Patient- and Family-Centered Care (IPFCC). We spoke to her about her experience in patient and family engagement and improving patient safety, including how to continue to partner with families during pandemics and through technology.

St Clair B, Jorgensen M, Nguyen A, et al. Gerontol Geriatr Med. 2022;8:23337214221144192.
Older adults in long-term care settings can be vulnerable to patient safety incidents. This scoping review of 46 articles identified several gaps in the research on adverse events in long-term care and nursing home settings, including the absence of resident perspectives regarding safety and the role of interpersonal and environmental factors on the incidence of adverse events.
Multi-use Website

Centers for Medicare and Medicaid Services.

The Centers for Medicare & Medicaid Services (CMS) support transparency through the provision of publicly available information on the quality of health care service in the United States. This portal enables access to comparative quality and safety data from doctors & clinicians, hospital, nursing home, home health, hospice, inpatient rehabilitation facilities, long-term care hospitals, and dialysis facilities to support informed consumer health care provider selection activities.

Jefs L, Kuluski K, MacLaurin A, et al. Ottawa, Ontario, Canada: Healthcare Excellence Canada; 2022.

Patient engagement in safety improvement goes beyond activities related to direct care. This report highlights the value that patient perspectives bring to the effort to translate the results of a national measures program to strengthen strategic progress and patient and family program involvement.

Washington, DC: United States Government Accountability Office; November 30, 2021. Publication GAO-22-105142.

Patient complaints have the potential to be used for care improvement as they surface problems in health facilities. This report examined complaint response processes in Veterans Affairs nursing homes and found them lacking. Five recommendations submitted to drive improvement underscore the value of adherence to policy and the transfer of complaint experiences to leadership.
Manias E, Bucknall T, Hutchinson AM, et al. Expert Opin Drug Saf. 2021:1-19.
Medication errors are a common cause of preventable harm in long-term care facilities. This systematic review explored how residents and families engage in medication management in aged care facilities. Factors hindering effective engagement included insufficient communication between residents, families, and providers; families’ hesitation about decision making; and lack of provider training.
Rand S, Smith N, Jones K, et al. BMJ Open. 2021;11(3):e043206.
Care home settings, such as nursing homes or residential care homes, present unique challenges to patient safety. This systematic review identified several gaps in the available safety measures used for quality monitoring and improvement in older adult care homes, including patient experience (e.g., quality of life or other resident-reported indicators of safety), psychological harm related to the care home environment, abusive or neglectful practices, and the absence of processes for integrated learning.
Tzeng H-M, Jansen LS, Okpalauwaekwe U, et al. J Nurs Care Qual. 2021;36(4):327-332.
Patient falls are an ongoing patient safety concern, yet mitigating falls among inpatients remains challenging. This article describes one nursing home’s experience adapting the Fall TIPS program for use in their patient population. The program, which emphasizes tailored fall-prevention and patient-family engagement, resulted in a decrease in the rate of falls and injuries.

de Bienassis K, Llena-Nozal A, Klazinga N for the Organisation for Economic Co-operation and Development. Paris, France: OECD Publishing; 2020. OECD Health Working Papers, No. 121.

Adverse events in long term care facilities are acerbated due to staffing, training and financial challenges. This report examined the costs of avoidable problems in long term care and suggests prevention strategies that center on workforce skill development and safety culture improvement.
This piece describes patient safety risks when caring for frail older patients and summarizes potential approaches for clinicians to minimize this risk.
Heidi Wald
Dr. Wald, MD, MSPH, is the Chief Quality and Safety Officer at SCL Health in Denver, CO. She has previously served as a physician advisor for the Colorado Hospital Association and as a Quality Committee Chair for the American Geriatrics Society. We spoke with her about patient safety concerns when caring for frail older patients.
Deb Bakerjian PhD, APRN, FAAN, FAANP, FGSA |
A large and growing number of Americans require care in skilled nursing facilities, inpatient rehabilitation facilities, or long-term acute care hospitals, often after an acute hospitalization. Data indicates that more than 20% of patients in these settings experience an adverse event during their stay.
Mody L, Greene T, Meddings J, et al. JAMA Intern Med. 2017;177(8):1154-1162.
Catheter-associated urinary tract infections are considered preventable never events. This pre–post implementation project conducted in long-term care facilities employed a multimodal intervention, similar to the Keystone ICU project. This sociotechnical approach included checklists, care team education, leadership engagement, communication interventions, and patient and family engagement. The project was conducted over a 2-year period across 48 states. In adjusted analyses, this effort led to a significant decrease in catheter-associated urinary tract infections, despite no change in catheter utilization, suggesting that needed use of catheters became safer. A related editorial declares this project "a triumph" for AHRQ's Safety Program for Long-term Care.