A scoping review examining patient experience and what matters to people experiencing homelessness when seeking healthcare.

BACKGROUND: Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort. METHODS: A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman's multidimensional quality model. People with lived experience of homelessness were employed as part of the research team. RESULTS: Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America (n = 17), United Kingdom (n = 5), Australia (n = 5) and Canada (n = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of 'accessible and timely', 'person-centred', and values of 'dignity and respect' and 'kindness with compassion' were most prevalent. Among the three patient experience surveys identified, 'accessible and timely' and 'person-centred' were the most frequent domains. The least frequently highlighted domains and values were 'equitable' and 'holistic'. No questions addressed the 'safety' domain. CONCLUSIONS: The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of 'Kindness and compassion' require further emphasis when seeking feedback on healthcare experiences and the domains of 'safety', 'equitable', and 'efficiency' are not adequately represented in existing patient experience surveys.

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease.

BACKGROUND: The 'diagnostic odyssey' is a common challenge faced by patients living with rare diseases and poses a significant burden for patients, their families and carers, and the healthcare system. The diagnosis of rare diseases in clinical settings is challenging, with patients typically experiencing a multitude of unnecessary tests and procedures. To improve diagnosis of rare disease, clinicians require evidence-based guidance on when their patient may be presenting with a rare disease. This study aims to identify common experiences amongst patients with rare diseases, to inform a series of 'red flags' that can aid diagnosis of rare diseases in non-specialist settings. A questionnaire was developed by Medics for Rare Diseases, informed by the experiences of clinicians, rare disease patients and patient advocates, and was shared with UK-based rare disease patient groups. Study participants were engaged via social media platforms, blogs and email newsletters of three umbrella rare disease organisations. The questionnaire, comprising 22 questions, was designed to identify typical experiences relating to physical and psychosocial manifestations and presentation of disease, patient interactions with healthcare providers, and family history. RESULTS: Questionnaire responses were received from 79 different rare disease patient groups and the common experiences identified were used to inform seven red flags of rare disease: multi-system involvement (3 or more); genetic inheritance pattern; continued presentation throughout childhood and adulthood; difficulties at school, especially relating to absences, difficulty participating in physical education and experiences of bullying or social isolation; multiple specialist referrals; extended period with unexplained symptoms; and misdiagnosis. In light of the red flags identified, recommendations for primary care and education settings have been proposed, focusing on the need for holistic assessment and awareness of both physical and psychosocial factors. CONCLUSIONS: This study identified key commonalities experienced by patients with rare disease across physical and psychosocial domains, in addition to understanding patients' history and experiences with healthcare providers. These findings could be used to develop a clinical decision­making tool to support non-specialist practitioners to consider when their patient may have an undiagnosed rare condition, which may minimise the challenges of the 'diagnostic odyssey' and improve the patient experience.

Patients' experiences with methylcobalamin injections in amyotrophic lateral sclerosis.

BACKGROUND AND OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease with no definitive treatment. Vitamin B12 is not a Food and Drug Administration-approved treatment in the United States, although it has been prescribed off-label as ultra-high-dose methylcobalamin, which has been shown to be safe and effective in slowing functional decline in patients with ALS. This study evaluates the impact of Vitamin B12 injections on the quality of life of five patients. METHODS: Semi-structured interviews were conducted with the patients and caregivers. The data was carefully read, coded, and organized into themes and sub-themes by two independent researchers. RESULTS: The study found four themes and 11 subthemes from the data, including initial circumstances, administration of the injection, subjective experience with Vitamin B12, and outcomes and expectations. All participants recognized some benefits from Vitamin B12 injections, specifically increased energy, reduced fatigue, and improved balance. However, some patients had difficulty monitoring its specific effect due to the progressive nature of the disease. DISCUSSION: The flexibility offered by this intervention is beneficial for patients with declining mobility and strength who wish to adapt their treatment to their schedule. This work is a modest call to fill the existing gap in the literature and push for more randomized controlled trials investigating and clarifying the effects of Vitamin B12 injections on disease progression, muscle function, and quality of life in a small but diverse pool of patients with ALS.

Identifying the supportive care needs of people affected by non-muscle invasive bladder cancer: An integrative systematic review.

PURPOSE: To understand supportive care needs among people with non-muscle invasive bladder cancer (NMIBC). METHODS: An integrative systematic review was reported using the Preformed Reporting Items for Systematic Review and Meta-analyses (PRISMA) guidelines. Seven electronic databases were searched for relevant studies, including all quantitative, qualitative, and mixed methods studies, irrespective of research design. The review process was managed by Covidence systematic review software. Two reviewer authors independently performed data extraction using eligibility criteria. Quality appraisal was conducted, and a narrative synthesis was performed. RESULTS: A total of 1129 articles were screened, of which 21 studies met the inclusion criteria. The findings revealed that the frequency of supportive care needs reported by NMIBC participants included psychological/emotional (16/21:76%), physical (16/21:76%), practical (8/21:38%), interpersonal/intimacy (7/21:33%), family-related (7/21:33%), health system/information (5/21:23%), social (4/21:19%), patient-clinician communication (3/21:14%), spiritual (1/21:5%) and daily needs (1/21:5%). CONCLUSION: People affected by NMIBC experience anxiety, depression, uncertainty, and fear of recurrence. The physical symptoms reported included urinary issues, pain, sleeping disorders and fatigue. These supportive care needs persist throughout the participants' treatment trajectory and can impact their quality of life. IMPLICATIONS FOR CANCER SURVIVORS: Identifying supportive care needs within the NMIBC population will help inform future interventions to provide patient-centred care to promote optimal well-being and self-efficacy for people diagnosed with NMIBC.

Acupuncture as a Complementary Treatment Modality in the Post-Anesthesia Care Setting: A Feasibility Study.

Introduction: Postoperative pain management and postoperative nausea and vomiting are a persistent challenge for both health care providers and patients. Acupuncture is an effective and safe modality for the management of pain and nausea, and has the potential to play a key role in postoperative pain management. This study explores the utility and feasibility of acupuncture in the immediate postoperative setting. Methods: In a retrospective case-control study, 22 patients who underwent elective surgeries and received acupuncture in the post-anesthesia care unit (PACU) were compared with 88 case controls. Indications for acupuncture therapy included persistent pain, nausea, or anxiety. Patient satisfaction and symptom improvement after acupuncture were assessed. PACU nurses and patients were queried on their perspectives on using this therapy. Demographic data, perioperative opioid consumption, pain score in the PACU, incidence of postoperative nausea, PACU length of stay, and unintended hospital admission were assessed. The groups with/without acupuncture were compared using Wilcoxon rank sum test or Fisher's exact test as appropriate. Results: A total of 78.9% of patients receiving acupuncture felt improvement in their symptoms. 94.7% of recovery nurses who cared for patients who received acupuncture felt that it was helpful and 78.9% did not believe it was disruptive. Patients who opted for acupuncture had a statistically significant higher overall median (interquartile range) pain score in the PACU (7.0 [5.2, 9.5] vs. 5.0 [3.0, 7.0], p = 0.009) and higher postoperative opioid consumption (22.5 [9.8, 44.8] vs. 15.0 [0.0, 30.0], p = 0. 03). There was no difference between total perioperative opioid consumption between groups (p = 0.94). Conclusions: Most patients who received acupuncture therapy in the PACU were satisfied with their therapy and would recommend it to future patients undergoing surgery. Most recovery nurses felt it was helpful, was not disruptive, and would like to see it utilized in the PACU.

Reimagine the ICU: Healthcare Professionals' Perspectives on How Environments (Can) Promote Patient Well-Being.

OBJECTIVE: This study aims (1) to understand the needs and challenges of the current intensive care unit (ICU) environments in supporting patient well-being from the perspective of healthcare professionals (HCPs) and (2) to explore the new potential of ICU environments enabled by technology. BACKGROUND: Evidence-based design has yielded how the design of environments can advocate for patient well-being, and digital technology offers new possibilities for indoor environments. However, the role of technology in facilitating ICU patient well-being has been unexplored. METHOD: This study was conducted in two phases. First, a mixed-method study was conducted with ICU HCPs from four Dutch hospitals. The study investigated the current environmental support for care activities, as well as the factors that positively and negatively contribute to patient experience. Next, a co-creation session was held involving HCPs and health technology experts to explore opportunities for technology to support ICU patient well-being. RESULTS: The mixed-method study revealed nine negative and eight positive patient experience factors. HCPs perceived patient emotional care as most challenging due to the ICU workload and a lack of environmental support in fulfilling patient emotional needs. The co-creation session yielded nine technology-enabled solutions to address identified challenges. Finally, drawing from insights from both studies, four strategies were introduced that guide toward creating technology to provide holistic and personalized care for patients. CONCLUSION: Patient experience factors are intertwined, necessitating a multifactorial approach to support patient well-being. Viewing the ICU environment as a holistic unit, our findings provide guidance on creating healing environments using technology.

From Monologue to Dialogue: The Pursuit of Relationship Centered Communication Across a Large, Integrated Healthcare System.

By listening to the "voice" of patients, Northwell Health, New York's largest healthcare organization, took an evidence-based approach to empowering physicians and advanced care providers. The Relationship Centered Communication course utilizes experiential learning to strengthen patient-centered communication and empathy skills to elicit provider-patient relationships grounded in partnership. This case study highlights (1) The pragmatic cultural journey requiring visionary leadership, strong collaborations, and an evolving educational strategy. (2) Over the course of 6 years, 3300+ providers were educated in this evidence-based communication course. (3) As a result, Northwell's Hospital Consumer Assessment of Healthcare Providers and Systems "Communication with Doctors" domain has increased by 22 percentile rank points, when compared nationally to peers, in addition to other notable patient experience metric improvements within ambulatory medical practice.

Emotional, Psychological, and Social Well-being Experience of Long-Term Living with Type 1 Diabetes Mellitus: A Patient-Psychiatrist-Endocrinologist Perspective.

Type 1 diabetes mellitus (T1DM) is a chronic autoimmune disease that impacts blood glucose levels and can also lead to an increased prevalence of psychiatric conditions. Living with T1DM has been associated with a significant impact on a person's social, mental, and psychological quality of life (QoL). Stressors related to T1DM include the demands of managing the condition, acceptance of the diagnosis, and recognition of the sizeable personal responsibility involved in managing the condition. Participating in treatment designed to improve QoL can still take a psychological toll on individuals with T1DM and can lead to a wide range of psychological distress, including anxiety, fear, depression, stress, anger, frustration, and denial (among many others). Ongoing research seeks to investigate the range of psychiatric conditions that are common among people with T1DM. Bringing patient perspectives into research to design and implement workable solutions is the future of a novel holistic approach to managing T1DM-related mental health impact. Connecting with other people living with T1DM, clinicians, counselors/therapists, mental health professionals, and social workers might alleviate some of the challenges of managing the emotional issues and psychological distress associated with T1DM. Here, we provide the perspective of someone with over 33 years of living with T1DM, its impact on his mental health, QoL, the steps undertaken, and the path to successful management. This perspective is complemented by opinions from two expert clinicians-an endocrinologist and a psychiatrist. Sharing the real-life subjective burden experienced by the person living with diabetes could be one step towards increasing awareness of the toll of mental health disorders on people living with T1DM. This patient experience, complemented by expert endocrinologist and psychiatrist opinions, could pave the way for an effective two-way dialogue to manage the condition effectively.

Whakawhanaungatanga-Building trust and connections: A qualitative study indigenous Maori patients and whanau (extended family network) hospital experiences.

AIMS: Investigated the experiences of Maori (the Indigenous peoples of Aotearoa, New Zealand) patients and whanau (extended family network) engaging with acute hospital inpatient services and their priorities for a Maori-centred model of relational care. DESIGN: A qualitative Maori-centred research design using a Thought Space Wananga (learning through in-depth group discussion, deliberation and consideration) approach. METHODS: Two wananga were conducted between May 2022 and June 2022, with 13 Maori patients who had been acutely hospitalized within the past 12 months and their whanau members. The first wananga utilized storytelling and journey mapping to collect data. The second wananga refined the initial themes. Wananga were audio-recorded and then inductively coded and developed into themes. RESULTS: Thirteen patients and whanau attended the first wananga, while 10 patients and whanau participated in the second wananga). Four themes were developed: (1) Whakawhanaungatanga (establishing connections and relationships), (2) Whakamana (uplifting the status and esteem of Maori), (3) Whakawhitiwhiti korero (the importance of communicating, discussing and deliberating) and (4) Kotahitanga (working together with purpose) all provide insights into the importance of effectively engaging and connecting with Maori patients and whanau when acutely hospitalized. CONCLUSIONS: The experiences and priorities of Maori patients and whanau affirm the international literature, suggesting that Indigenous relational concepts are critical to building relationships, connections and trust. Despite existing healthcare models for working with Indigenous peoples, their poor application contributes to sub-optimal healthcare experiences at all points of their healthcare journey. A relational mode of practice focused on engagement and forming connections better meets the needs of Indigenous peoples engaging with inpatient health services. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Despite the existence of Indigenous models of care, Indigenous peoples consistently report a lack of engagement and connection when accessing inpatient health services. Without establishing relationships, applying models of care is challenging. IMPACT (ADDRESSING): What problem did the study address? Internationally, healthcare systems are consistently ill-equipped to deliver culturally safe care for Indigenous and marginalized peoples, evident in ongoing health inequities. Like other reports of Indigenous experiences of health services, Maori express dissatisfaction with care delivery in an acute inpatient setting. This study investigated Maori patients and whanau experiences engaging with acute hospital inpatient services and their priorities for a Maori-centred model of relational care. What were the main findings? Maori patients and whanau recounted negative experiences with healthcare professionals lacking effective relationships and trust. Satisfaction occurred when engagement with health care professionals resembled Indigenous cultural rituals of encounter that considered their holistic, collective and dynamic worldviews. Previous models of relational care, while helpful, are not Indigenous and so do not address their needs, such as engagement as a mode of practice (how) to achieve this. Where and on whom will the research have an impact? This research impacts Indigenous peoples' health outcomes, particularly Maori, and nurses and clinicians working and interacting within acute inpatient and other hospital settings. Indigenous research methods support co-constructing knowledge for translation into practical outcomes through transformational practices, policies and theory development. REPORTING METHOD: We used the Consolidated Criteria for Strengthening the Reporting of Health Research Involving Indigenous Peoples (CONSIDER) statement (see File S2-CONSIDER Checklist) and the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines (see File S3-COREQ Checklist). PATIENT OR PUBLIC CONTRIBUTION: Maori patients and their whanau interviewed about their experiences were involved in data interpretation.

Exploring the implementation of person-centred care in nursing practice.

Person-centred care involves nurses working in partnership with patients to ensure their needs and preferences are at the centre of their healthcare, as well as considering the biographical and social factors that are relevant to the person's health. This aims to support patients in developing the knowledge, confidence and skills to make informed decisions about treatment and to manage their own care where possible. This article discusses the concept of person-centred care and considers some of the facilitators and barriers that may affect its implementation in healthcare practice. It also explores some of the approaches that nurses can use to support person-centred care, such as cultural humility and role modelling.

The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study.

INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.

Impact of COVID-19 on patient experience of kidney care: a rapid review.

INTRODUCTION: In March 2020, a pandemic state was declared due to SARS-COV-2 (COVID-19). Patients with kidney disease, especially those on replacement therapies, proved more susceptible to severe infection. This rapid literature review aims to help understand how the pandemic impacted patient experience of kidney care. METHODS: It was conducted in accordance with Cochrane Rapid Review interim guidance. Search terms, 'coronavirus', 'kidney care', and 'patient-reported experience' and terms with similar semantic meaning, identified 1,117 articles in Medline, Scopus, and Worldwide Science. Seventeen were included in the narrative synthesis. RESULTS: The findings were summarised into three themes: remote consultation and telemedicine (n = 9); psychosocial impact (n = 2); and patient satisfaction and patient-reported experience (n = 6). Patients were mostly satisfied with remote consultations, describing them as convenient and allowing avoidance of hospital visits. Anxieties included missing potentially important clinical findings due to lack of physical examination, poor digital literacy, and technical difficulties. Psychosocial impact differed between treatment modalities-transplant recipients expressing feelings of instability and dread of having to return to dialysis, and generally, were less satisfied, citing reduced ability to work and difficulty accessing medications. Those on home dialysis treatments tended to feel safer. Findings focused on aspects of patient experience of kidney care during the pandemic rather than a holistic view. CONCLUSIONS: There was little direct evaluation of modality differences and limited consideration of health inequalities in care experiences. A fuller understanding of these issues would guide policy agendas to support patient experience during future public health crises.

'Naming and faming' maternity care providers: A mixed-methods study.

BACKGROUND: Positive benchmarking can serve as a catalyst for maternity care improvement. AIM: To retrospectively benchmark Flemish maternity care providers' qualities, based on women's positive care experiences, and to explore which attributes of the different care providers contribute to these experiences. METHODS: A sequential, two-phased mixed-methods study benchmarking the qualities of the community midwife, the hospital midwife, and the obstetrician. An online questionnaire was used to collect the data among pregnant and postpartum women, who rated their care experiences with the various care providers using the Net Promoter Score. Non-parametric and post hoc tests established the differences between types of clinicians and between antenatal, intrapartum, and postpartum Net Promoter Score mean scores. Content analysis was used to construct a final pool of keywords representing attributes of care professionals, accumulated from the promoters' free text responses. Ranks were assigned to each keyword based on its frequency. FINDINGS: A total of 2385 Net Promoter Scale scores and 1856 free-text responses of 1587 responders were included. The community midwife received the overall highest NPS scores (p < .001). The promoters (n = 1015) assigned community midwives the highest NPS scores (9.67), followed by obstetricians (9.57) and hospital-based midwives (9.51). The distinct benchmarking attributes of community midwives were availability (p < .001), supportiveness (p = .04) and personalised care (p < .001). Being honest (p < .001), empathic (p < .001) and inexhaustible (p = .04) benchmarked hospital midwives. Calmness (p < .001), a no-nonsense approach (p < .001), being humane (p = .01) and comforting (p = .02) benchmarked obstetricians. DISCUSSION/CONCLUSION: The findings indicate that all care providers are highly valued, but community midwives are ranked the highest. The distinct differences between the care professionals can serve as exemplary performance for professional development and shape the profiles of maternity care professionals.

The Lived Experience of Pediatric Gene Therapy: A Scoping Review.

Little is known about patients' and families' lived experiences of participating in pediatric gene therapy (GT) clinical trials. Currently, pediatric GT research targets a broad range of indications--including rare and ultra-rare diseases--which vary in severity and in the availability of alternative therapies. Pediatric GT differs meaningfully from adult GT because the decision to participate involves a dyad of both the child and parent or caregiver/s. It is critical to understand patients' and caregivers' perceptions and experiences of social, emotional, physical, and logistical burdens or benefits of participating in such trials, and how they weigh and prioritize these factors when deciding whether to participate. We conducted a scoping review of the current literature in this subject area with objectives to (1) provide an overview of existing literature, (2) identify gaps and areas for further research, and (3) better understand the lived impact of pediatric GT research on patients and their parents/caregivers. Four themes emerged, including (1) weighing risks and benefits (2) timing of GT trial participation, (3) value of clear communication, and (4) potential impact on quality of life. Notably, our sample surfaced articles about how patients/parents/caregivers were thinking about GT-their understanding of its safety, efficacy, and risks-rather than accounts of their experiences, which was our initial intention. Nevertheless, our findings offer useful insights to improve the informed consent process and promote a more patient- and family-centered approach. Moreover, our findings can contribute to patient advocacy organizations' efforts to develop educational materials tailored to patients' and families' expressed informational needs and perspectives, and can inform more patient- and family-centered policies from GT clinical trial sponsors.

Patient Perspectives of Chronic Disease Management and Unmet Care Needs in South Korea: A Qualitative Study.

Understanding and incorporating patients' perspectives are necessary to address the emerging challenge of chronic disease management. Our study examined patients' perceptions and experiences for the current chronic disease management system in South Korea. Focus group interviews were conducted on 23 patients and 11 themes emerged by qualitative content analysis. The participants experienced in terms of provider-patient interaction: doctors only prescribe medicine, doctors who provide conventional advice, doctors who do not respect the patients' opinion, long wait times and inadequate consultations, lack of personalized care, and freedom to select another doctor. They also experienced in their community and health system: struggling alone, commercial media and folk remedies, lack of IT technologies for care, demanding visiting services, and lack of collaboration in the community. We found that patients needed comprehensive and personalized care, respect from providers, and self-management support and collaborated care with the community using information technologies advancement. Our findings suggest that a fundamental change in the South Korean healthcare system paradigm is required for successful chronic care, including payment and healthcare delivery systems.

Evaluating the accuracy of a cataract surgery simulation video in depicting patient experiences under conscious anesthesia.

PURPOSE: To evaluate the accuracy of a point-of-view cataract surgery simulation video in representing different subjective experiences of patients undergoing the procedure. METHODS: One hundred consecutive post-cataract-surgery patients were shown a short simulation video of the surgery obtained through a porcine eye model during the first postoperative week. Patients then answered a multiple-choice questionnaire regarding their visual and tactile intraoperative experiences and how those experiences matched the simulation. RESULTS: Of the patients surveyed (n = 100), 78% (n = 78) recalled visual experiences during surgery, 11% recalled pain (n = 11), and 6.4% (n = 5) recalled frightening experiences. Thirty-six percent of patients (n = 36) were interviewed after their second cataract surgery; there was no statistically significant difference between anxiety scores reported before the first eye surgery and second eye surgery (p = 0.147). Among all patients who recalled visual experiences (n = 78), nearly half (47.4%) reported that the video was the same/similar to their experience. Forty-eight percent of the patients recommended future patients to watch the video before their procedures, and more than a third (36%) agreed that watching the video before surgery would have helped them to relax. CONCLUSIONS: Our model reflects the wide range of subjective patient experiences during and after surgery. The high percentage of patients who found the video accurate in different ways suggests that, with more development, point-of-view cataract simulation videos could prove useful for educational or clinical use. Further research may be done to confirm the simulation's utility, by screening the video for subjects before operations.

Longer length peripheral catheters in sickle cell treatment: a more efficient and cost-effective care pathway.

Patients with sickle cell disease require frequent venous access for red blood cell exchange transfusions to manage their condition. Such frequent access can lead to scar tissue formation, increased pain on insertion, and difficult vascular access for the patients. Previous attempts at achieving successful venous access for patients with difficult venous access has been made with central venous lines, usually femoral lines, which required a large amount of nursing input and resulted in anxiety and pain on insertion for patients. In this article, the author reports on a new pathway with a longer-length peripheral intravenous catheter that reduces the nursing time burden during line insertion, requires less equipment and, crucially, results in a less painful procedure for patients. The increased efficiency of the pathway resulted in a cost saving of £149 per insertion, and patient feedback revealed that the longer-length catheter was preferred over femoral lines.

Is there a need for change in cancer survivorship care? A qualitative exploration of survivor experiences and needs at the Sydney Cancer Survivorship Centre Clinic.

PURPOSE: Effective cancer survivorship care is contingent on a comprehensive understanding and management of the dynamic needs of cancer survivors. The Sydney Cancer Survivorship Centre (SCSC) clinic established a holistic, multidisciplinary model of survivorship care. We aimed to explore survivors' experiences and perceptions of the clinic, and to identify their unmet needs. METHODS: Semi-structured focus groups (FGs) involving participants recruited from the SCSC clinic were conducted by an experienced facilitator and observer using a guide covering: survivor perceptions of first SCSC clinic visit, services accessed, ongoing unmet needs, and how needs changed over time. FGs were audio-recorded and transcribed. Interpretive description using a Framework approach was undertaken and participant characteristics summarised descriptively. RESULTS: Eight FGs were conducted involving a total of 26 participants (mean age: 60), most were female (n = 20), born in Australia (n = 14), and with breast cancer diagnoses (n = 16). Four overarching themes were identified: (i) perceptions of the SCSC clinic; (ii) patient-centred care; (iii) adjustment to illness; and (iv) external supports and resources. Participants valued the centralisation of multidisciplinary survivorship care at the SCSC clinic, which helped their recovery. Mitigating ongoing treatment sequelae, reassurance of good-health, normalisation of survivorship experiences, and handling caregiver stress represent some needs identified. CONCLUSIONS: The SCSC clinic offers holistic, specialised care and reassurance to cancer survivors. Adjustment to the survivorship journey, inter-survivor shared experiences, and management of physical treatment sequelae were perceived as important in their recovery. Managing survivor needs is integral to improving long-term survivorship care.

Patient perception of spinal cord injury through social media: An analysis of 703 Instagram and 117 Twitter posts.

Introduction: Social media has developed exponentially over the last decade as a means for individuals and patients to connect to others and has provided a unique opportunity for physicians to provide broader information to the general public to attempt to positively modify health behavior. The purpose of this study was to assess the patient's perception of spinal cord injury (SCI) on social media. Methods: Instagram and Twitter social media platforms were analyzed to determine posts written by patients with SCI. The initial search for Instagram posts tagged with "#spinalcordinjury" yielded over 270,000 posts in April 2021. Posts pertaining to the patient's experience were retrospectively collected from January 2020 to April 2021. Twitter posts that included "#spinalcordinjury," "@spinalcordinjury," and "spinal cord injury" were retrospectively collected in April 2021. One hundred seventeen tweets were found that were directly from a patient with SCI. Themes associated with patients' experiences living with SCI were coded. Results: The most common theme on Instagram was spreading positivity and on Twitter was the appearance of the wheelchair (75.8% and 37.3%, respectively). Other common themes on Instagram were the appearance of a wheelchair (71.8%), recovery or rehabilitation (29.9%), and life satisfaction (29.0%). Prevalent themes on Twitter included spreading positivity (23.2%) and recovery or rehabilitation (21.3%). Conclusion: The prevalence of themes of positivity and awareness may indicate the utilization of social media as a support mechanism for patients living with SCI. Identification of prevalent themes is important for the holistic treatment of SCI survivors.

The Introspective Patient Experience of Mistletoe Therapy in Cancer: A Qualitative Study.

INTRODUCTION: The introspective experience of cancer patients using mistletoe therapy has received little scientific interest, although it is crucial for a holistic understanding of this therapy. This study contributes to patient-centered research and treatment by documenting the subjective experiences of individuals undergoing mistletoe therapy. METHODS: In this qualitative, explorative study, 20 outpatients with a history of various cancer types were recruited from Arlesheim Hospital (Arlesheim, Switzerland). All patients received subcutaneous mistletoe therapy for at least 2 years (median 7.5 years). Data was collected through 2 semi-structured, in-depth interviews per patient. Qualitative content analysis was applied to examine the data. The individual experience of mistletoe therapy was analyzed in relation to 6 predefined levels of human experience: physical, vital, emotional, mental, spiritual and social. In addition, 3 further aspects, considered as cross-dimensional perspectives, emerged out of the material: warmth, immune strengthening, and general wellbeing. RESULTS: Data analysis revealed considerable heterogeneity among patients' experiences with mistletoe therapy. The importance of specific aspects became apparent, such as increased vitality to manage daily life, greater emotional and mental stability, warmth as a multidimensional phenomenon, feelings of safety and protection through mistletoe therapy, heightened self-awareness and improved self-care, as well as sensations of spiritual connectedness. CONCLUSIONS: Prior to this study it had not been shown that cancer patients using mistletoe therapy do have observations on different levels of experience. These results may lead to a deeper understanding of patients receiving mistletoe therapy, enabling them to be supported in a more holistic way both during mistletoe treatment and on their life path. Further investigations into the effects of mistletoe therapy on the emotional, mental, and spiritual level are warranted.