Patient Experience Journal (PXJ, The Beryl Institute)
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Development of an experienced quality measure for clients, informal and formal caregivers in home care in the Netherlands: A participatory action research
Get PDFTo optimise home care provision and to identify potential improvements in the care process, it is important to gain insight into the care experiences that influence care quality. The aim was to develop a qualitative experienced quality measure for home care in The Netherlands, facilitating conversations between clients and caregivers in generating possible points of improvement for the primary care process. A participatory action research design to develop the measure following three iterative cycles, using various data sources in evaluating requirements related to the goal, feasibility in care setting, and usability in the care process. The final design comprises an instruction meeting for district nurses and a structured approach to evaluate experienced quality with clients, informal caregivers, and formal caregivers. The measure encompasses cards to visually support communicating on experienced quality themes (e.g., personal needs and expectations), sub-themes (e.g., preferred way of communicating needs), exemplary questions, and a reporting sheet. The first evaluation gave indications of the measure results in formulating concrete points of improvement for the primary care process. This study indicates that the developed experienced quality measure seems promising relating to requirements for its goal, feasibility in the care setting, and usability in the care process. More insight is needed if and how improvements are communicated, documented, and followed-up in practice. In the next step, the measure should be extensively tested and evaluated in a more diverse sample (e.g., clients with dementia) for measuring experienced quality and reflecting on its outcomes.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Global child and family-centered care fellowship, education and mentorship for pediatric healthcare professionals: A literature review
Get PDFChild- and family-centered care (FCC) is increasingly accepted and implemented to optimize the healthcare experience for patients, their families, and healthcare professionals. Standish Foundation for Children, a 501(c)(3) non-profit, has designed and piloted a fellowship to educate pediatric healthcare professionals in FCC & psychosocial care via an inquiry and mentorship model in Tbilisis, Georgia. This review aimed to evaluate and synthesize existing literature on psychosocial and FCC mentorship for pediatric healthcare professionals in four parts: ongoing need, effects on healthcare professionals, effects on children and their families and/or caregivers, and in cross-country healthcare settings. Reviewers searched open-source databases for articles in English published between 2010 and 2021. Opportunities for psychosocial and FCC skills development is both desired and needed by pediatric healthcare professionals, a viewpoint shared by families of pediatric patients. Existing mentorship models varied in design but overall improved provider confidence and ability to provide FCC in clinical settings. Some support for these interventions improving patient and family clinical outcomes is documented, although further research is necessary. In cross-country healthcare settings with varying resource levels, clinical mentorship in general can improve quality and delivery of care without requiring entirely new approaches. This review supports psychosocial mentorship models as an effective tool for child- and family-centered care delivery. Future research into long-term professional and patient outcomes, FCC impact on pediatric patients with non-traditional family units, and in cross-country settings is recommended to gain a more comprehensive understanding of how FCC can improve quality of healthcare.
Experience Framework
This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
The importance of patient engagement in the management of giant cell arteritis
Get PDFGiant cell arteritis (GCA) is a vascular condition characterized by ocular, systemic and neurological symptoms. Visual loss is the dreaded complication of this condition, prompting expedient diagnosis and treatment. Treatment typically involves prolonged glucocorticoid therapy which is often accompanied by several undesired side effects. In this report, we document one patient’s experience with GCA, its treatment, and relapse. Particularly, the patient highlights the difficulties and successes he had with the disease and its treatment. We also document the physician perspective on this disease and its treatment, specifically discussing the significance of prolonged treatment with glucocorticoids. We comment on the importance of patient experience and engagement in the setting of GCA and its management, particularly focusing on our recommendations of patient education over multiple visits and individualizing glucocorticoid treatment.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Needle phobia: How to improve the child\u27s experience during blood drawing
Get PDFPediatric diseases, pain and hospitalization have an important impact on children and their families. This is especially significant when considering common invasive procedures, such as blood drawing. The objectives of the study were to assess the experience of children and families during the blood drawing procedure and suggest methods for improvement. The study was conducted in a children’s hospital in Barcelona, Spain, between 2018 and 2020. A mix-method design or combination of qualitative and quantitative methodologies was developed. We carried out a search of the literature, a design thinking approach, and a survey. Results from the qualitative approach identified areas for improvement, such as, the lack of information about the process of blood collection before testing, management of fear or pain, and characteristics of the physical space, among others. Regarding the quantitative approach, 277 persons (patients and families) were interviewed. And, although there were high levels of satisfaction among them about the blood drawing procedure, they also stressed the importance of the information received prior the test, the distraction techniques, and the physical space. From these results, we made different actions like information leaflets and fact sheets, distraction elements in the waiting room (wall vinyl, therapeutic dogs and clowns), and modification of the cabins. Although these results cannot be generalized to the population, they serve as an example of how to improve patient and family experience and include them in the decision-making process. In the current pandemic, further research should be done to adapt these results to the “new normal.”
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
The value of community psychiatric services for the elderly’s dementia caregiver group: Exploring the perspectives of participants
Get PDFCommunity Psychiatric Services for the Elderly (CPSE) at a large teaching hospital in Toronto has offered a monthly support group for caregivers of persons with dementia for over 30 years. Participants were surveyed in January 2018 about group attendance, benefits of attending the group, and areas for improvement. Results are shared in this case study. A total of 8 participants responded to the survey with a response rate of 47%. The feedback was predominantly positive. The most prevailing theme that emerged from the survey responses was group members’ appreciation for the opportunity to meet with one another to discuss relevant issues and gain support from the facilitator and each other. Feedback from the survey also revealed opportunities for improvement on how the group could be better facilitated to elicit more equal participation from all group members. Formally assessing the value of the group from the perspectives of participants confirmed that the group is a safe place for dementia caregivers to get support and a valuable way to access knowledge from dementia care experts. COVID-19 has fostered evolution of the group from in-person to virtual meeting, opening opportunities for more feedback from members to help create the future of the dementia caregiver support group.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Focus on optimal health, not ideal health
Get PDFProviders strive to help patients live the best, healthiest life they are capable of living. However, those efforts should involve a careful assessment of what the patient’s optimal health status is. It is deleterious to the therapeutic relationship to drive a patient towards a health status they are not able to attain. This article provides a brief commentary on the author’s experience as a patient to illustrate this point.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Consumer representative experiences of partnership with health workers in Australia
Get PDFWe examine the experiences of Consumer Representatives participating in consumer engagement activities across a public health service in NSW, Australia. A team of Consumer Representatives and staff members use a participatory, constructivist paradigm and a hermeneutic phenomenological approach to analyse ten interviews with Consumer Representatives over three years 2017-2019, and three focus groups in 2020. We explore these experiences and identify the linked contextual factors from their points of view. Consumer Representatives were prepared to invest their time, but they needed respect. “Respect” from a consumer perspective was being meaningfully included, supported and heard, and activities needed to be purposeful and relevant. They operated in a complex environment of people and systems that were sometimes frustrating and hindered partnership. Nevertheless, they were optimistic their involvement made a difference although this may take time. Using hermeneutic phenomenology enabled the results to be seen clearly after a comprehensive and highly iterative process engaging with participants-as-researchers. The results challenge the usual default position of engaging consumers in committees and reveal other opportunities to focus on patient-centred care, as mandated by Australian National Standards for hospital accreditation. Respect is identified as a practice necessary to enhance engagement. Health organisations may improve consumer engagement outcomes as mandated for accreditation by being aware of the experiences of Consumer Representatives giving their time to partner with staff members and health systems. Staff may mitigate Consumer Representative negative experiences by being mindful of the complex people and system environment within health that can impede successful engagement.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Perceptions of the healthcare system among stakeholders
Get PDFThe U.S. healthcare system is rife with complexities and is consistently a source of political debate. One’s interaction with the system may directly impact the understanding of the system. The objective of this research is to examine the perceptions of the United States healthcare system from the viewpoint of healthcare providers, insurers, and consumers. Using a grounded theory approach, theoretical sampling was used to explore similarities and differences between the three groups of actors in the healthcare system. Data were collected through interviews with thirty-one participants using a semi-structured interview schedule. Themes of cost, access, and inefficiency emerged from the data. The theme of cost included the ability to pay, innovative care delivery, and relation to access. Access included the need for guidance, geographical proximity to healthcare, and socioeconomic status. The theme of inefficiency included how insurance dictates care, and the unwieldy system. Similarities among groups were the high cost of care, ability to pay, and complexity. Differences discovered were the insurers’ dual role as professional and consumer, providers’ informal access to care, and differing views on who is to blame for the high cost of healthcare. This research unveils perspectives of three stakeholders of actors in the healthcare system, providing a foundation for further research to better understand these perspectives in improving equity and access in healthcare.
Experience Framework
This article is associated with the Staff & Provider Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Patients’ experiences and satisfaction with health care in the Salah Azaiez Institute of Cancer in Tunisia in 2020
Get PDFMeasurement of patient-centered care is a key step to ensure quality of care improvement. The aims of this study were to evaluate the experience of hospitalized patients of Salah Azaiez Institute (SAI) of Cancer of Tunisia in 2020 and to analyze factors associated to the global satisfaction. It was a cross-sectional study. The used questionnaire was derived from the Picker patient questionnaire. Factors associated to the global satisfaction were assessed using Chi-squared and Fisher’s exact tests. The present study concerned 200 inpatients of the SAI. The Cronbach’s α of the patient experience test (PPE-15) was of 0.82 indicating a good internal consistency. According to results of this study, only 38.5% of the patients were satisfied with their hospitalization. Perception of the quality of the received treatment was good to excellent for 57.0%. Regarding the global organization, 56.5% of the patients found it intermediate and 21.5% perceived it as bad. The highest scores among patient experience dimensions concerned the coordination of healthcare, the respect for patient preference and the physical comfort. However, lowest scores were attributed to the involvement of family and friends, the information and patient education and the emotional support. Unlike socio-demographic factors, patient experience and its dimensions was strongly associated to the global satisfaction. Further studies are recommended to explore patient experience dimensions and other determinants of patient satisfaction in Tunisia.
Experience Framework
This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
Traversing barriers to health care among LGBTQ+ Latinx emerging adults: Utilizing patient experiences to model access
Get PDFEnduring multiple sources of marginalization, lesbian, gay, bisexual, transgender, and/or queer (LGBTQ+) youth of color living at the United States-Mexico border navigate stigma and health challenges surrounding their LGBTQ+ and ethnic identities. This study sought to delineate barriers to health care experienced by marginalized young adult patients.
We qualitatively examined the patient experiences of 41 LGBTQ+ Latinx young adults (ages 18-24) in the Rio Grande Valley between 2016 and 2017. Often tied to their experiences of emerging adulthood, most respondents emphasized how financial barriers, including cost of services and disruptions to insurance status, prevented them from seeking care (barriers to care). However, youth also underscored how prior patient experiences tied to their ethnic and LGBTQ+ identities, including apprehension discussing their sexuality with care providers (barriers within care), shaped their health care seeking strategies. This study utilized patient experiences to delineate potential sources of barriers to care experienced by LGBTQ+ Latinx young adults. Practitioners should seek to actively create inclusive and identity-affirming care environments and be sensitive to how prior negative experiences may be deterring young adult patients from seeking care or revealing personal details during the care encounter. If we are to better model access, we need to consider the patient experiences of diverse populations.
Experience Framework
This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens