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This Element provides a fresh approach to the representation and experience of the French Disease, by reassessing a wide range of textual and visual sources through the lens of contemporary medical ideas. It analyses how knowledge about the Great Pox was transmitted to a literate and also a wider public through performance and the circulation of popular prints. Chronicles, satirical and moralistic poems and plays about prostitutes, along with autobiographical accounts, described symptoms and the experience of patients, reflecting how non-medical men and women understood the nature of this terrible new disease and its profound physical and psychological impact. The second major theme is how the French Disease was represented visually. Woodcuts and broadsheets showing the moral and physical decline of courtesans are analysed together with graphic medical illustrations of symptoms and their treatment together with images of the diseased body of St Job, patron saint of the French Disease.
Mandated by the Affordable Care Act of 2010, hospices were required to provide information regarding the Hospice Quality Reporting Program, with a reduced reimbursement tied to hospices if they fail to submit data to the Centers for Medicare and Medicaid Services. The purpose of this study was to examine the association between hospice organizational and community factors and quality of hospice care as measured by patient experience through Hospice Consumer Assessment of Healthcare Providers & Systems (CAHPS®) survey.
Methods
We used secondary data from Hospice Compare, Healthcare Cost Report Information System Dataset, Rural–urban commuting area codes, and the American Community Survey to examine the relationship between hospice patient/family experience and hospice organizational-level and community-level factors for the period 2017–2020. The unit of analysis was hospice-year observations.
Results
For-profit and chain-affiliated hospices were negatively associated with CAHPS® scores. Organizational longevity and Medicare payer mix were positively associated with CAHPS® scores. Hospice community factors including competition, per capita income, and the racial/ethnic minorities’ percentage were negatively associated with CAHPS® scores.
Significance of results
Hospice organizational and community factors were related to hospice quality of care. Interventions that account for organizational and community factors may be needed to improve patient/family experience of hospice care.
We created a web-based design guide to transfer our previous research findings to better support design education in the digital health design area for improving patient experience. To seek insights to iteratively improve the design guide, we conducted a workshop with 19 MSc students who specialized in design for healthcare. The guide was perceived as having the potential to improve their understanding of digital PEx improvements, but the content clarity and information presentation need to be improved.
Empowering the Participant Voice (EPV) is an NCATS-funded six-CTSA collaboration to develop, demonstrate, and disseminate a low-cost infrastructure for collecting timely feedback from research participants, fostering trust, and providing data for improving clinical translational research. EPV leverages the validated Research Participant Perception Survey (RPPS) and the popular REDCap electronic data-capture platform. This report describes the development of infrastructure designed to overcome identified institutional barriers to routinely collecting participant feedback using RPPS and demonstration use cases. Sites engaged local stakeholders iteratively, incorporating feedback about anticipated value and potential concerns into project design. The team defined common standards and operations, developed software, and produced a detailed planning and implementation Guide. By May 2023, 2,575 participants diverse in age, race, ethnicity, and sex had responded to approximately 13,850 survey invitations (18.6%); 29% of responses included free-text comments. EPV infrastructure enabled sites to routinely access local and multi-site research participant experience data on an interactive analytics dashboard. The EPV learning collaborative continues to test initiatives to improve survey reach and optimize infrastructure and process. Broad uptake of EPV will expand the evidence base, enable hypothesis generation, and drive research-on-research locally and nationally to enhance the clinical research enterprise.
In Canada, foreign-born older adults (FBOAs) have a higher prevalence of chronic conditions and poorer self-reported physical and mental health than their Canadian-born peers. However, very little research has explored FBOAs’ experiences of health care after immigration. This review aims to understand the patient experiences of older immigrants within the Canadian health care system. Employing Arksey and O’Malley’s framework for scoping reviews, we searched six databases and identified 12 articles that discussed the patient experience of this population. Although we sought to understand patient experience, the studies largely focused on barriers to care, including: communication difficulties, lack of cultural integration, systematic barriers in health care, financial barriers, and intersecting barriers related to culture and gender.
This review provides insight into new areas of research and advocates for strengthened policy and/or programming. Our review also highlights that there is a paucity of literature for an ever-growing segment of the Canadian population.
Chaplains provide spiritual care in a variety of settings and are an important part of palliative and supportive care teams. This study aims to describe chaplain interactions from the perspective of the recipients of care.
Methods
The study draws on data from a nationally representative survey conducted by the Gallup Organization in March 2022.
Results
Two main groups of recipients were identified: primary recipients and visitors/caregivers. Current typologies of chaplain activities focus on primary recipients of care, but a similar proportion of chaplain interactions takes place with visitors/caregivers. Bivariate analysis was used to compare the experiences of the chaplains’ primary recipients of care to other recipients of care and the experiences of visitors/caregivers to other recipients of care. Primary recipients of care were significantly more likely to have religious interactions with the chaplain and to experience the interactions as valuable and helpful.
Significance of results
This study is the first to show the groups of people – primary recipients and visitors/caregivers – who receive care from chaplains. It demonstrates how care recipients experience care differently from chaplains based on their position, which has important implications for spiritual care practice.
This chapter explores the ways in which mental health patients experience spirituality, based on case studies of patients and emerging data from an ongoing study in Birmingham, UK. Psychiatric patients commonly experience spirituality/religion as an awareness of something beyond their physical senses that is of great importance to them. Many turn to spirituality when they become unwell, deriving great strength from it, and for most patients it is closely linked with recovery. However, spirituality does not always have a positive impact, and spiritual struggles can increase mental distress. Spirituality thus has a major influence on mental well-being and recovery. Spiritual care aims to overcome spiritual problems and maximise the benefits of spirituality. It involves finding the right person to help each individual and is very popular with patients. Many patients also want to talk about their spirituality with clinicians and have their spiritual needs addressed as part of clinical treatment.
“Patient support” is a concept far broader than the traditional offer of a phone number for a counselor and handing her a pamphlet. It encompasses optimal clinical management, as well as an organizational structure for the whole service to optimize patient experience. We first summarize supporting women over 40 during the COVID pandemic, followed by providing key steps of an individualized clinical management strategy, and the requirements of patient support structures. However, unlike previous publications, this chapter does not end by simply outlining what is desirable. It proceeds to a number of practical steps that fertility services can follow, using the framework of “patient experience architecture” to build suitable structured pathways. Furthermore, it explores the path of digital transformation in an effort to reduce cost and improve consistency delivering core professional values in every interaction. At the end of the chapter there is a short list of useful reading.
Childhood cancer survivors are at risk of developing primary recurrences and new second cancers. Experiencing a recurrence and/or second cancer can be highly distressing for survivors and families. We aimed to understand the psychological impacts of experiencing a recurrence or second cancer and how this potentially influences survivors’ engagement with survivorship care.
Methods
We invited childhood cancer survivors or their parents if survivors were ≤16 years of age from 11 tertiary pediatric oncology hospitals across Australia and New Zealand to complete interviews. We conducted a thematic analysis facilitated by NVivo12.
Results
We interviewed 21 participants of whom 16 had experienced a recurrence, 3 had a second cancer, and 2 had both a recurrence and second cancer. Participants reported that a recurrence/second cancer was a stressful sudden disruption to life, accompanied by strong feelings of uncertainty. Participants tended to be less aware of their second cancer risk than recurrence risk. Some participants reported feelings of anxiousness and despair, describing varying responses such as gratitude or avoidance. Participants shared that the fear of cancer recurrence either motivated them to adopt protective health behaviors or to avoid information and disengage from survivorship care.
Significance of results
Some survivors and their parents have a poor understanding and expressed reluctance to receive information about their risk of second cancer and other treatment-related late effects. Improving the delivery of information about late effects to families may improve their engagement with survivorship care and surveillance, although care must be taken to balance information provision and survivors’ anxieties about their future health.
Therapeutic radiographers are the first point of contact for cancer patients undergoing radiotherapy treatment and therefore have an important role in providing both physical and psychosocial support to these patients. This study aimed to evaluate therapeutic radiographers’ perception about their role in identifying and providing psychosocial support for patients receiving RT treatment.
Method:
The study used a cross-sectional, prospective research design. A self-designed questionnaire was distributed to all therapeutic radiographers (n = 26) working at a radiotherapy department in Malta.
Results:
A total of 21 therapeutic radiographers completed the questionnaire. All participants felt that the provision of psychological care was an important part of their role as therapeutic radiographers. The majority of the participants reported having the most confidence in giving treatment-related symptoms advice rather than psychological support. The most common barrier to providing psychological support was lack of training (95·2%), followed by the lack of an appropriate screening tool (85·7%), availability of private space to talk to patients (76·2%) and a lack of knowledge (61·9%).
Conclusion:
While most therapeutic radiographers believed that providing psychosocial support was an important aspect of their role, several barriers prevented them from fulfilling this role. Training, the introduction of a psychosocial screening tool and clear referral processes are recommended to improve radiotherapy service.
The magnetic resonance linear accelerator system (MR Linac) is a novel piece of radiotherapy (RT) equipment allowing the routine application of daily MR-guided treatment adaptation. The hardware design required for such technical capabilities and the increased complexity of the treatment workflow entails a notable departure from cone beam computed tomography (CBCT)-based RT. Patient tolerability of treatment is paramount to RT practice where high compliance is required. Presented is a comparative analysis of how such modality specific characteristics may ultimately impact the patient experience of treatment.
Materials and Methods:
Forty patients undergoing RT for prostate cancer (PCa) on either the MR Linac (n = 20) or a CBCT-based linac (n = 20) were provided with a validated patient reported outcomes measures (PROM’s) questionnaire at fraction 1 and fraction 20. The 18-item questionnaire provided patient responses recorded using a 4-point Likert scale, 0 denoting a response of ‘Not at all’, 1 ‘Slightly’, 2 ‘Moderately’ and 3 signifying ‘Very’. The analysis provided insight into both comparisons between modalities at singular time points (fractions 1 and 20), as well as a temporal analysis within a single modality, denoting changing patient experience.
Results:
Patients generally found the MR Linac treatment couch more comfortable, however, found the increase in treatment duration harder to tolerate. Responses for all items remained stable between first and last fraction across both cohorts, indicating minimal temporal variation within a single modality. None of the responses were statistically significant at the 0·01 level.
Conclusion:
Whether radiotherapy for PCa is delivered on a CBCT linac or the MR Linac, there is little difference in patient experience with minimal experiential variation within a single modality.
Healthcare services have evolved with advances in science, technology and societal needs. Despite being around for two decades, 'X-ray at Home' has seen limited adoption. Understanding its enablers and disablers can lead to insights to develop an accessible healthcare service ecosystem. Healthcare organisations have adopted design thinking to develop new products but healthcare service design is still in its introductory phase. This qualitative study describes the current state of home X-ray services in Mumbai and proposes touchpoints for raising awareness, acceptance and patient experience.
Describes simple low-cost additions to the physical space of an ED organized around the patient’s sensory, mobility, and comfort needs. Emphasizes design thinking concepts to focus on the patient experience when making changes. Catalogues more extensive changes to the environment, working in circles out from the patient – to the room, the unit, the hospital. Counsels against the “quick fix” of building projects without the foundation of people and processes.
To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality.
Background:
Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes.
Method:
This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis.
Findings:
This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced.
Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic.
Computerised cognitive behavioural therapy (CCBT) has been made available within the National Health Service (NHS) across Scotland as an alternative treatment for mild to moderate anxiety and depression. However, the provision of CCBT services is still limited in the NHS, possibly affecting delivery of this computer-aided therapy to patients and inhibiting acceptance and uptake of this intervention. This paper reports on the qualitative exploration of patients’ experiences and acceptance of one CCBT programme delivering computer-assisted therapy (Beating the Blues: BTB), examining particularly the point of referral, access to treatment, and support. Thematic analysis was conducted on semi-structured face-to-face and email interviews with 33 patients at different NHS organisations across Scotland. Data analysis generated six key themes which illustrated patients’ experiences relating to referral and access to the treatment, and the challenges they faced: (1) information dissemination; (2) expectations and the impact of waiting for BTB; (3) impact of locations on experience of BTB; (4) preference for home access; (5) desire for better human support; and (6) desire for additional application support features. The findings highlighted that better methods of implementing and delivering such CCBT services together with the design of the technological interventions are vital to the success of these services.
Key learning aims
(1) To understand the service models and methods of implementing and delivering one CCBT programme (BTB) in routine care;
(2) To learn about user experiences of accessing and using BTB; and
(3) To learn about the implications and factors that might have influenced uptake and understand the implications.
The patient experience of radiotherapy magnetic resonance (MR) simulation is unknown. This study aims to evaluate the patient experience of MR simulation in comparison to computed tomography (CT) simulation, identifying the quality of patient experience and pathway changes which could improve patient experience outcomes.
Materials and Methods:
MR simulation was acquired for 46 anal and rectal cancer patients. Patient experience questionnaires were provided directly after MR simulation. Questionnaire responses were assessed after 33 patients (cohort one). Changes to the scanning pathway were identified and implemented. The impact of changes was assessed by cohort two (13 patients).
Results:
Response rates were 85% (cohort one) and 54% (cohort two). 75% of cohort one respondents found the magnetic resonance imaging (MRI) experience to be better or similar to their CT experience. Implemented changes included routine use of blankets, earplugs and headphones, music and feet-first positioning and further MRI protocol optimisation. All cohort two respondents found the MRI experience to be better or similar to the CT experience.
Findings:
MR simulation can be a comfortable and positive experience that is comparable to that of standard radiotherapy CT simulation. Special attention is required due to the fundamental differences between CT and MRI scanning.
Introduction: Outpatient oncology clinics have become the mainstay of cancer treatment, but their limited services and hours of operation often lead to emergency department (ED) referrals. With Canada's aging population and cancer survival rates improving, cancer-related ED visits are becoming a significant aspect of emergency medicine. A cancer-related visit to the ED is associated with unique challenges for patients, their caregivers and clinicians. This study focuses on understanding the ED experience of patients and their caregivers sent from an outpatient oncology clinic to a separate affiliated large academic hospital. Methods: A descriptive, phenomenological study of interviews was conducted using the method of Giorgi. The sample included 12 participants (n = 9 patients, 3 caregivers) referred to the ED at a large academic hospital (i.e., Toronto General Hospital, TGH) following a same-day outpatient oncology appointment at an affiliated cancer centre (i.e., Princess Margaret Hospital, PMH). Interviews continued until thematic saturation. All transcripts were analyzed by 2 reviewers with bracketing to ensure accuracy. Results: Four themes were identified from analysis: (1) communication; (2) expectations; (3) care and symptom management and (4) potential improvements. Overall patients and caregivers felt communication between PMH and TGH, and from providers could have been better. Many felt there was a break-down in communication as they did not expect to go through the usual ED triage process, which caused additional anxiety and frustration with the wait times. The majority felt their symptoms were managed in a timely manner and reported the staff to be friendly, caring and professional; however, often felt forgotten and anxious due to a lack of “checking-in”. Their experience could have been improved by receiving more information on the process, a more welcoming environment and separate waiting area or private room for those who are immunocompromised. Conclusion: Although referral from an outpatient oncology clinic to the ED of an affiliated hospital is a common process within Canada, this is the first study to explore the patient and caregiver experience. Understanding the patient and caregiver experience is valuable for identifying quality improvement initiatives. Our analysis revealed the patient and caregiver experience could be improved with better communication and expectation setting regarding the ED process before and throughout the visit.
Introduction: The Maximizing Aging Using Volunteer Engagement in the ED (MAUVE + ED) program connects specially trained volunteers with older patients whose personal and social needs are not always met within the busy ED environment. The objective of this study was to describe the development and implementation of the MAUVE + ED program and the activities performed with older patients by its volunteers. Methods: The MAUVE + ED program was implemented in the ED (annual census 65,000) of a large academic tertiary hospital in Toronto, Ontario. Volunteers were trained to identify and approach older patients and others at greater risk for adverse outcomes, including poor patient experience, in the ED and invite such patients to participate in the program. The program is available to all patients >65 years, and those with confusion, patients who were alone, those with mobility issues, and patients with increased length of stay in the ED. Volunteers documented their activities after each patient encounter using a standardized paper-based data collection form. Results: Over the program's initial 6-month period, the MAUVE + ED volunteers reported a total of 896 encounters with 718 unique patients. The median (IQR) time a MAUVE volunteer spent with a patient was 10 (5, 20) minutes, with a range of 1 to 130 minutes. The median (IQR) number of patients seen per shift was 7 (6, 9), with a range of 1 to 16 patients per shift. The most common activities the volunteer assisted with were therapeutic activities/social visits (n = 859; 95.9%), orientation activities (n = 501; 55.9%), and hydration assistance (n = 231; 25.8%). The least common were mobility assistance (n = 36; 4.0%), and vision/hearing assistance (n = 13; 1.5%). Conclusion: Preliminary data suggest the MAUVE + ED volunteers were able to enrich the experience of older adults and their families/carers in the ED.
Introduction: Patients with poorly-controlled diabetes often visit the emergency department (ED) for treatment of hyperglycemia. While previous qualitative studies have examined the patient experience of diabetes as a chronic illness, there are no studies describing patients’ perceptions of ED care for hyperglycemia. The objective of this study was to explore the patient experience regarding ED hyperglycemia visits, and to characterize perceived barriers to adequate glycemic control post-discharge. Methods: This study was conducted at a tertiary care academic centre in London, Ontario. A qualitative constructivist grounded theory methodology was used to understand the experience of adult patient partners who have had an ED hyperglycemia visit. Patient partners, purposively sampled to capture a breadth of age, sex, disease and presentation frequency were invited to participate in a semi-structured individual interview to probe their experiences. Sampling continued until a theoretical framework representing key experiences and expectations reached sufficiency. Data were collected and analyzed iteratively using a constant comparative approach. Results: 22 patients with type 1 or 2 diabetes were interviewed. Participants sought care in the ED over other options because of their concern of having a potentially life-threatening condition, advice from a healthcare provider or family member, or a perceived lack of convenient alternatives to the ED based on time and location. Participants’ care expectations centred around symptom relief, glycemic control, reassurance and education, and seeking referral to specialist diabetes care post-discharge. Finally, perceived system barriers that challenged participants’ glycemic control included affordability of medical supplies and medications, access to follow-up and, in some cases, the transition from pediatric to adult diabetes care. Conclusion: Patients with diabetes utilize the ED for a variety of urgent and emergent hyperglycemic concerns. In addition to providing excellent medical treatment, ED healthcare providers should consider patients’ expectations when caring for those presenting with hyperglycemia. Future studies will focus on developing strategies to help patients navigate some of the barriers that exist within our current limited healthcare system, enhance follow-up care, and improve short- and long-term health outcomes.
Introduction: Women experiencing early pregnancy loss or threatened loss frequently seek care in emergency departments (ED) or early pregnancy clinics (EPC). The dearth of existing qualitative studies has left understudied questions about how these women perceive their healthcare and which strategies best meet their supportive care needs, particularly in the Canadian context. The objective of this study was to deepen our understanding of these women's experiences and gain insight into how clinicians and healthcare services can lessen the impact of this traumatic event on patients and their families. Methods: We conducted a descriptive qualitative study of women who presented to the ED or EPC at an urban tertiary care hospital and an urban community hospital for early pregnancy loss or threatened loss. Purposive sampling was used to recruit patients for in-depth, one-on-one telephone interviews conducted 4-6 weeks after the index visit. Data collection and analysis were concurrent and continued until thematic saturation had occurred. Data analysis was led by two qualitative researchers with support from a multi-disciplinary research team following standard thematic analysis techniques. Results: Interviews were completed with 59 women between July 2018 and August 2019. Participants ranged in age from 22 to 47 years and reflect the diversity of the multicultural city where the study occurred. Our analysis revealed that the medicalization and normalization of early pregnancy complications among ED and EPC clinicians is at odds with women's general lack of knowledge about the frequency, personal risk, causation, duration, and physical intensity of the miscarriage experience. Women identified the value of rapid access to appointments, point of care ultrasound, detailed care plans, and knowledgeable advice as key to lessening the physical and emotional trauma related to early pregnancy loss. Conclusion: This research highlights the physical, emotional, and psychological complexity of a medical situation frequently minimized within the current healthcare system. The results impart important knowledge about which aspects of ED and EPC care are most valued by women experiencing early pregnancy loss or threatened loss and demonstrate the clear need for women and their families to be provided with more education about the totality of the early pregnancy experience, including the possibility of pregnancy complications and loss.