Patient Experience Journal (PXJ, The Beryl Institute)
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Involving patients and families in a social robot study
Get PDFInnovative research in care practice for older people can benefit from the active involvement of patient and family partners. Involvement may begin with identifying priorities, then move to formulate research questions and to plan the research methods, to data collection, and finally to analysis and knowledge dissemination. However, in the field of dementia care, actively engaging patients and families in co-research is a novel practice that needs exploration. This paper describes the experiences and perspectives of two patient researchers and three family researchers, along with four clinicians (two physicians, a nurse, and an occupational therapist) within a social robot project in dementia care. Meeting notes, team reflection focus groups, follow–up interviews, and a research journal were used to document the research process. The results are presented in three themes: (a) identify challenges and lessons learned, (b) co-inquire enriched learning, (c) co-produce knowledge for care improvement. All team members agreed that an inclusive environment was important to facilitate meaningful partnerships for undertaking research together. Trust and respect were seen as vital for a rewarding and productive experience in the co-inquiry journey. Some of the challenges to sustaining participant engagement were competing priorities and a risk of tokenism. This article provides a rich description as well as practical details of the research experiences among team members. We offer examples of lessons learned and practical tips to help others increase the engagement of patients and families in research.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len
Call for Submissions Special Issue - July 2020: Patient & Family Experience in Behavioral Health
Get PDFPatient Experience Journal (PXJ) is excited to announce the call for submissions for its July 2020 special issue on the topic of patient & family experience in behavioral health. With a continued focus on the critical role of behavioral health in society today and a growing recognition of the importance of experience for those in behavioral health settings, a conversation on the practices in place and the identification of evidence of efforts leading to positive outcomes will be essential expanding the experience conversation in this setting. This special issue is open to all authors conducting cutting-edge research, implementing innovative practices or with powerful experiences to share around efforts to address the patient and family experience in behavioral health settings. The issue will look for pieces that address evidence-based efforts at improvement, practices that have impact on outcomes or stories that reflect the opportunities for elevating the human experience in behavioral health. In looking across care settings and across behavioral health issues, this special issue of PXJ looks to build a foundational collection of knowledge and information that will continue to push the conversation on experience forward. It will provide an opportunity to highlight accomplishments, reveal new findings and contribute to the literature aimed at improving results for all looking to ensure excellence in behavioral health settings.
The deadline for submissions for this issue is April 1, 2020. Articles should be identified as intended for the special issue during the submission process
Awakening from a medical mystery: one patient’s experience of being undiagnosed
Get PDFThis personal narrative pleads for a supportive and comprehensive system or sub-system similar to that which exists for cancer patients, to deal with undiagnosed illnesses. By describing the torment of living with a debilitating illness that medicine could not easily recognize, then by contrasting this experience with my wife’s experience of the cancer care system, and by referring along the way to lessons learned many years ago from reading the works of the inciteful neurologist, Dr. Oliver Sacks, I hope to inspire the medical system to develop a separate, supportive and comprehensive system to deal with the undiagnosed. As it turns out, my mystery illness was a spontaneous cerebrospinal fluid (CSF) leak. This condition is all too often missed in diagnosis or dismissed, and treatment is often significantly delayed, such as it was in my case for nearly two years. At the same time, my wife experienced the cancer system, allowing us to draw contrasts between the two experiences and leading me to implore the system to draw the two approaches together by identifying some of the missing elements for those with undiagnosed illnesses. To conclude, I make reference to the relatively new Undiagnosed Diseases Network as one possible model to accomplish the above goal across the medical system or within local medical systems.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Patient perspectives: Four pillars of professionalism
Get PDFProfessionalism is a core component of healthcare practice and education; however, there is often not a consistent description of professionalism, and current definitions lack a key perspective: that of the patient. This study aimed to deepen understandings of patients’ perspectives on how professionalism should be enacted by healthcare providers. Using a phenomenological approach informed by constructivist theory, the study team conducted semi-structured interviews and focus groups with 21 patients to ascertain their views on professionalism. Data analysis was conducted using a constant comparative approach wherein initial analysis informed subsequent data collection. Participant themes fell into four pillars of professionalism: taking a collaborative human-first approach; communicating with heart and mind; behaving with integrity; and practicing competently. This study highlights patient perspectives on professionalism and examines consistencies and differences between those perspectives and those of healthcare providers, which are extensively described in the literature. While published literature highlights competence and communication as main aspects of professionalism which our participants also focused on, participants in this study emphasized integrating patients into care teams, employing empathy, and demonstrating integrity.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Enhancing emergency care environments: Supporting suicidal distress and self-harm presentations through environmental safeguards and the built environment
Get PDFSelf-harming and suicidal distress are prevalent, worldwide healthcare issues. Existing literature explains that both self-harm and suicidal presentations at Emergency Departments are increasingly occurring, correlating to high costs in healthcare service delivery. This scoping review aimed to (1) identify the current body of literature which examined the relationship between design practice and service user experiences within Emergency Departments for self-harm and suicidal distress presentations, and (2) identify the ways in which the built environment could increase the efficacy of therapeutic efforts through improving service user outcomes and experiences. This scoping review established that there was a paucity of research at the time of the review linking the design of the built environment with the provision of care for self-harm and suicidal distress presentations specifically in Emergency Departments. This is despite the fact that there is a significant body of literature pronouncing the links between good design practice and support of mental wellbeing. However, this scoping review established the existence of a limited range of articles related to how design practice can assist in addressing challenging behaviours, such as service user violence, and issues associated with triage of clients with a mental illness. Design strategies from the literature are collated and discussed. Limitations of the field and potential methodologies to address these limitations are also presented.
Experience Framework
This article is associated with the Environment & Hospitality lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Using experience-based design to understand the patient and caregiver experience with delirium
Get PDFHospital-acquired delirium negatively affects clinical outcomes and the care experience for patients and family caregivers. Following the qualitative methods of experience-based design, we completed observations of hospital units and interviews of patients, caregivers (including family members and other companions), and hospital nurses and other staff regarding their experiences with delirium. In addition, we administered an experience-based design questionnaire to another 130 subjects from the same groups. Key findings included: there is a need for preparation of the patients and family caregivers for the possibility of delirium (particularly before surgery), and patients and caregivers lack understanding of delirium and its potential prolonged aftereffects. We identified that caregivers may both contribute and detract from delirium care as they: (1) often identify delirium early; (2) are invaluable for supporting patients during re-orientation after delirium episodes; (3) frequently lack the preparation and skills for adequate delirium detection and response; (4) may not be present at critical times; (5) can be challenging for the delirium management team, and (6) are frequently discussed as the person who best understands the patients’ baseline cognitive state and behavior. Experience-based design is an innovative framework to increase our qualitative understanding of the patient and caregiver experience during and following episodes of hospital acquired delirium
Patient participation in medical consultations: the experience of patients from various ethnolinguistic backgrounds
Get PDFPatient participation in health care is a priority. Yet, patients’ perspective with regards to their experiences of participation is not well understood. Moreover, few studies have attempted to explore the perspective of ethnolinguistic minority patients. The objectives of this study, to explore 1) patients’ experiences of participation in medical consultations with physicians, and 2) potential variations in these experiences based on participants’ ethnolinguistic status. Using a qualitative design, 60 participants, from various ethnolinguistic background, took part in individual semi-structured interviews. A content analysis was performed to identify emerging themes. The results, five themes emerged in response to the first objective and are organized in two key dimensions: a) participation in terms of information exchange (e.g. asking questions, providing information), and b) participation in terms of assertive behaviours (e.g. setting the agenda, expressing one’s viewpoint, making a request). Across these themes, two levels of participation emerged: proactive participation (i.e. patient initiated) and responsive participation (i.e. physician initiated). Proactive participation was discussed more often. Patients also discussed experiences of non-participation, although these were less common. In response to the second objective, patients who faced a language barrier, regardless of their ethnic background, discussed less participative experiences. In general, participants spoke positively of experiences in which they participated, thus suggesting that patient participation is valued by patients. Patients seemed to have a broad view of patient participation, thus suggesting that the concept of patient participation should be extended beyond participation in decision-making. Language fluency seems key to ensure patient participation
Exploring interventions to increase primary care providers’ use of self-management goals
Get PDFAccreditors, such as the Joint Commission, consider evidence of patient engagement strategies for awarding Primary Care/Patient-Centered Medical Home (PCMH) accreditation. This project explored the use of brief Motivational Interviewing (MI) training at a local county health center and evaluated the impact on the documented use of self-management goals (SMGs) for patients with diabetes and hypertension. Methods included a professional development program, including an online module, presentation, and educational materials. The goal was to increase providers’ MI knowledge and skills to better construct and document SMGs. The program impact was evaluated by chart review to determine the use of SMGs by providers in patients with diabetes and hypertension. The presentation evaluation included participant scoring of statements based on learning objectives. Results of the presentation objectives included \u3e than 3.88/4 means of each item and indicated satisfaction with the presentation. Pre implementation (N=120) chart review demonstrated that only 7% of the charts contained SMG documentation. One month after the program completion, no change (6%) was noted in providers’ (N= 86) SMG documentation. Informal interviews with providers indicated favorable attitudes toward increasing patient engagement with MI and formation of SMGs but challenges were identified such as too little time with patients, health literacy, and lack of resources. Conclusions indicate that innovative options should be developed to support providers in the development and documentation of SMGs
Socio-demographic predictors associated with capacity to engage in health care
Get PDFPatient engagement is essential to improve outcomes and reduce healthcare costs. This study aimed to examine the socio-demographic factors associated with one’s capacity to engage in their health care. An observational, cross-sectional study was performed including patients from five medical/surgical units of four health systems. Patients’ engagement capacity was assessed using the person engagement index (PEI) instrument which contains four subscales: engagement in health care, technology use in health care, proactive approach to health care, and psychosocial support for health care. Separate general linear models were applied for the PEI total score and each of the four subscale scores. Our results show that younger age was associated with greater technology use in health care. Individuals with higher educational levels have a greater overall engagement and the use of technology in their health care. A higher level of psychosocial support was found among blacks and those being employed. No difference in the proactive approach was found by one’s socio-demographic factors. This study illustrated that an individual’s age, race, educational level, and employment status were associated with the capacity to engage in different aspects of health care activities. Providers need to assess one’s readiness for engagement to deliver customized interventions based on their needs and capacity to engage.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len
Does the use of volunteers and playbooks in pediatric primary care clinic waiting rooms influence patient experience?
Get PDFThe purpose of this secondary data analysis was (1) to understand the use of a playbook as a positive distraction technique and (2) to explore the use of volunteers in the waiting room of an outpatient pediatric clinic setting. Specifically, the study examined the impact on perceived wait time, overall quality of care, and patient experience in a convenience sample of patients. Data obtained for a pilot program for improving patient experience were aggregated for exploratory analysis. Although significant differences in perceived wait time or patient experience were not found, the cohort exposed to both the playbook and volunteer intervention reported a significantly higher perceived quality of care. This analysis suggests the use of a playbook as a distraction technique along with the support of a waiting room volunteer may contribute to an increase in perceived quality of care in outpatient pediatric clinics