Assessing Perspectivalism in Patient Participation: An Evaluation of FDA Patient and Consumer Representative Programs

S. Scott Graham; Molly Kessler; Sang-Yeon Kim; Seokhoon Ahn; Daniel Card

doi:10.5744/rhm.2018.1006

Patient Participation in Rehabilitation Questionnaire

PsycTESTS Dataset ◽

10.1037/t77220-000 ◽

2013 ◽

Author(s):

Jeanette Lindberg ◽

M. Kreuter ◽

L.-O. Person ◽

C. Taft

Keyword(s):

Patient Participation

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Regional Variation in Patient Participation and Treatment among Acoustic Neuroma Association Survey Respondents Across the United States

10.1055/s-0040-1702752 ◽

2020 ◽

Author(s):

John P. Marinelli ◽

Samuel A. Spear ◽

Debbie L. Hahs-Vaughn ◽

Robert J. Macielak ◽

Michael J. Link ◽

...

Keyword(s):

United States ◽

Acoustic Neuroma ◽

Patient Participation ◽

Regional Variation ◽

The United States

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Improving smoking cessation in first episode psychosis: a quality improvement project by the City & Hackney Early and Quick Intervention Psychosis (EQUIP)

BMJ Open Quality ◽

10.1136/bmjoq-2020-001002 ◽

2020 ◽

Vol 9 (4) ◽

pp. e001002

Author(s):

Orestis Kanter Bax ◽

Nadim Hakim ◽

Michael Jeggo ◽

Declan Phelan ◽

Timothy Stevens ◽

...

Keyword(s):

Smoking Cessation ◽

Quality Improvement ◽

Patient Participation ◽

Smoking Status ◽

First Episode Psychosis ◽

Public Health Issue ◽

First Episode ◽

Improvement Project ◽

Episode Psychosis ◽

The City

Smoking tobacco is a major public health issue and a significant cause of increased mortality. People with a first episode of psychosis are more likely to smoke and the subgroup that goes on to have schizophrenia will have a significantly reduced life expectancy to the general population. The City & Hackney Early and Quick Intervention in Psychosis Team is a community mental health team at East London NHS Foundation Trust, providing outpatient care for adults presenting with first episode psychosis. This project aimed to increase the number of smoking cessation referrals from EQUIP to national smoking cessation services to 15% of the total team caseload over 6 months initially. A secondary measure was to complete an assessment of the smoking status for 90% of the caseload at all times. Change ideas were tested using plan-do-study-act cycles. A smoking cessation referral pathway was created and disseminated to the outpatient and inpatient services. The project was discussed at least monthly at the clinical team meeting. An education and skills building session was organised and took place at the team away day and an education drop-in session for patients was organised. The project was slow to take-off and patient participation was essential in driving progress. The aim was achieved at 23 months. A collateral benefit indicated that 25.7% of the total number of smokers had been recorded as having stopped smoking during the course of this project. This project demonstrates the effectiveness of quality improvement methodology facilitated by efficient leadership, collaborative teamwork, patient participation and persistence to address a complex problem that has significant consequences to patient health.

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Enhancing active patient participation in nursing handover: A mixed methods study

Journal of Clinical Nursing ◽

10.1111/jocn.15961 ◽

2021 ◽

Author(s):

Maryann Street ◽

Jenny Dempster ◽

Debra Berry ◽

Erika Gray ◽

Joanne Mapes ◽

...

Keyword(s):

Mixed Methods ◽

Patient Participation ◽

Mixed Methods Study ◽

Active Patient

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A descriptive analysis of end-of-life discussions for high-grade glioma patients

Neuro-Oncology Practice ◽

10.1093/nop/npab010 ◽

2021 ◽

Author(s):

Ai Chikada ◽

Sayaka Takenouchi ◽

Yoshiki Arakawa ◽

Kazuko Nin

Keyword(s):

End Of Life ◽

Health Care Providers ◽

Patient Participation ◽

High Grade Glioma ◽

Team Approach ◽

High Grade ◽

Care Providers ◽

Patient Goals ◽

Significant Difference ◽

Eol Care

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.

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Patient participation in electronic nursing documentation: an interview study among community nurses

BMC Nursing ◽

10.1186/s12912-021-00590-7 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Kim De Groot ◽

Elisah B. Sneep ◽

Wolter Paans ◽

Anneke L. Francke

Keyword(s):

Data Collection ◽

Electronic Health Records ◽

Thematic Analysis ◽

Patient Participation ◽

Medical Condition ◽

Nursing Documentation ◽

Health Records ◽

Technical Problems ◽

Care Plans ◽

Electronic Health

Abstract Background Patient participation in nursing documentation has several benefits like including patients’ personal wishes in tailor-made care plans and facilitating shared decision-making. However, the rise of electronic health records may not automatically lead to greater patient participation in nursing documentation. This study aims to gain insight into community nurses’ experiences regarding patient participation in electronic nursing documentation, and to explore the challenges nurses face and the strategies they use for dealing with challenges regarding patient participation in electronic nursing documentation. Methods A qualitative descriptive design was used, based on the principles of reflexive thematic analysis. Nineteen community nurses working in home care and using electronic health records were recruited using purposive sampling. Interviews guided by an interview guide were conducted face-to-face or by phone in 2019. The interviews were inductively analysed in an iterative process of data collection–data analysis–more data collection until data saturation was achieved. The steps of thematic analysis were followed, namely familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and reporting. Results Community nurses believed patient participation in nursing documentation has to be tailored to each patient. Actual participation depended on the phase of the nursing process that was being documented and was facilitated by patients’ trust in the accuracy of the documentation. Nurses came across challenges in three domains: those related to electronic health records (i.e. technical problems), to work (e.g. time pressure) and to the patients (e.g. the medical condition). Because of these challenges, nurses frequently did the documentation outside the patient’s home. Nurses still tried to achieve patient participation by verbally discussing patients’ views on the nursing care provided and then documenting those views at a later moment. Conclusions Although community nurses consider patient participation in electronic nursing documentation important, they perceive various challenges relating to electronic health records, work and the patients to realize patient participation. In dealing with these challenges, nurses often fall back on verbal communication about the documentation. These insights can help nurses and policy makers improve electronic health records and develop efficient strategies for improving patient participation in electronic nursing documentation.

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