Pub Date : 2024-08-05eCollection Date: 2024-01-01DOI: 10.1177/23743735241242717
Zain A Bhutta, Sameer A Pathan, Tuukka Puolakka, Naveed Akhtar, Stephen H Thomas, Tim Harris, Ashfaq Shuaib, Peter A Cameron, Maaret Castren
Evaluating stroke campaigns and associated behavioural changes is crucial to assess intervention effectiveness and inform future strategies. We aimed to evaluate patient's and bystanders' foreknowledge of stroke signs and symptoms and their response at stroke onset. We interviewed stroke patients using a validated questionnaire or their bystanders if the stroke patient had disabling stroke. The questionnaire was administered to 165 participants, 142 (86.1%) stroke patients and 23 (13.9%) bystanders. The mean age was 52.6 (SD = 11.7), and male-female ratio was 7:1. Among the participants, 33 (20.1%) had foreknowledge of stroke signs, and of these, 27 (16.5%) were aware of the stroke campaign in Qatar. The behavioural responses at stroke onset included; activating Emergency Medical Services (EMS) (n = 55, 33.3%), calling friends/relatives (n = 69, 41.8%), driving to hospital (n = 33, 20%), waiting for improvement in condition (n = 21, 12.7%). There was no association of ethnicity, marital status, or campaign awareness with EMS activation. Despite limited community awareness of stroke signs and campaign, help-seeking behaviour through EMS activation was generally high, underscoring the need for focused educational efforts and public health interventions.
{"title":"Assessing Stroke Awareness and Behavioural Response Following the National 'Act Fast' Stroke Awareness Campaign - Insights from a Cross-Sectional Survey in Qatar.","authors":"Zain A Bhutta, Sameer A Pathan, Tuukka Puolakka, Naveed Akhtar, Stephen H Thomas, Tim Harris, Ashfaq Shuaib, Peter A Cameron, Maaret Castren","doi":"10.1177/23743735241242717","DOIUrl":"10.1177/23743735241242717","url":null,"abstract":"<p><p>Evaluating stroke campaigns and associated behavioural changes is crucial to assess intervention effectiveness and inform future strategies. We aimed to evaluate patient's and bystanders' foreknowledge of stroke signs and symptoms and their response at stroke onset. We interviewed stroke patients using a validated questionnaire or their bystanders if the stroke patient had disabling stroke. The questionnaire was administered to 165 participants, 142 (86.1%) stroke patients and 23 (13.9%) bystanders. The mean age was 52.6 (SD = 11.7), and male-female ratio was 7:1. Among the participants, 33 (20.1%) had foreknowledge of stroke signs, and of these, 27 (16.5%) were aware of the stroke campaign in Qatar. The behavioural responses at stroke onset included; activating Emergency Medical Services (EMS) (<i>n</i> = 55, 33.3%), calling friends/relatives (<i>n</i> = 69, 41.8%), driving to hospital (<i>n</i> = 33, 20%), waiting for improvement in condition (<i>n</i> = 21, 12.7%). There was no association of ethnicity, marital status, or campaign awareness with EMS activation. Despite limited community awareness of stroke signs and campaign, help-seeking behaviour through EMS activation was generally high, underscoring the need for focused educational efforts and public health interventions.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241242717"},"PeriodicalIF":1.6,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11301737/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141898614","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-25eCollection Date: 2024-01-01DOI: 10.1177/23743735241259554
Eric C Ndukwu, Peter U Iwunna, Edith N Ndukwu, Daniel Orifamah
This research study investigated the effectiveness of Rational Emotive Behavior Therapy (REBT) on depression and anxiety during the coronavirus disease 2019 (COVID-19) pandemic in Nigeria. REBT is used in correcting irrational beliefs and behaviors. This study adopted a randomized pretest, post-test, control group design. Two trial-tested instruments covering; depression, anxiety, and irrational beliefs were for data collection. Data obtained with the instruments were analyzed using mean, standard deviation, and analysis of variance. The study revealed that REBT was effective in reducing depression and death anxiety in COVID-19 patients. The result of this study also showed that the introduction of REBT helped to curb the spread of COVID-19 disease by letting Nigerians to know that the existence, mode of spread, and consequences of the disease is real and not a myth.
{"title":"Effectiveness of Rational Emotive Behavior Therapy on Death Anxiety and Depression During the COVID-19 Disease: A Historical Approach.","authors":"Eric C Ndukwu, Peter U Iwunna, Edith N Ndukwu, Daniel Orifamah","doi":"10.1177/23743735241259554","DOIUrl":"10.1177/23743735241259554","url":null,"abstract":"<p><p>This research study investigated the effectiveness of Rational Emotive Behavior Therapy (REBT) on depression and anxiety during the coronavirus disease 2019 (COVID-19) pandemic in Nigeria. REBT is used in correcting irrational beliefs and behaviors. This study adopted a randomized pretest, post-test, control group design. Two trial-tested instruments covering; depression, anxiety, and irrational beliefs were for data collection. Data obtained with the instruments were analyzed using mean, standard deviation, and analysis of variance. The study revealed that REBT was effective in reducing depression and death anxiety in COVID-19 patients. The result of this study also showed that the introduction of REBT helped to curb the spread of COVID-19 disease by letting Nigerians to know that the existence, mode of spread, and consequences of the disease is real and not a myth.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241259554"},"PeriodicalIF":1.6,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11273574/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789429","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-25eCollection Date: 2024-01-01DOI: 10.1177/23743735241261237
Ivan Eduku Mozu, Afia Frimpomaa Asare Marfo, Mercy Opare-Addo, Nana Ofori Adomako, Pauline Boachie-Ansah, Joseph Attakorah, John Abeeku Graham-Bannerman
Non-communicable diseases are increasing, but detection and control are inadequate. Active involvement of community pharmacies in their management can improve the situation. This is an exploratory study to unearth the perceptions and expectations of customers of services offered by community pharmacies. A cross-sectional study was conducted in two regions of Ghana. A total of 535 clients participated. Counseling was the most patronized (71.0%) service with medication review (38.5%) being the least. The most readily available service was sale of prescription medications (63.7%). Proximity (72.1%) was the most influential factor for selecting a pharmacy to visit. Clients perceived the dispensing of medications (64.3%) as the principal role of the pharmacists. The presence of a pharmacist and good and quick customer service were of statistical significance to customer satisfaction. Customers visited facilities mostly for blood pressure monitoring and to refill their medications, and counseling was the most patronized service. These call for planning multifaceted approaches to improve the care of patients with chronic disease.
{"title":"Perspectives and Satisfaction of Consumers with Hypertension and Diabetes on Services Provided by Community Pharmacy.","authors":"Ivan Eduku Mozu, Afia Frimpomaa Asare Marfo, Mercy Opare-Addo, Nana Ofori Adomako, Pauline Boachie-Ansah, Joseph Attakorah, John Abeeku Graham-Bannerman","doi":"10.1177/23743735241261237","DOIUrl":"10.1177/23743735241261237","url":null,"abstract":"<p><p>Non-communicable diseases are increasing, but detection and control are inadequate. Active involvement of community pharmacies in their management can improve the situation. This is an exploratory study to unearth the perceptions and expectations of customers of services offered by community pharmacies. A cross-sectional study was conducted in two regions of Ghana. A total of 535 clients participated. Counseling was the most patronized (71.0%) service with medication review (38.5%) being the least. The most readily available service was sale of prescription medications (63.7%). Proximity (72.1%) was the most influential factor for selecting a pharmacy to visit. Clients perceived the dispensing of medications (64.3%) as the principal role of the pharmacists. The presence of a pharmacist and good and quick customer service were of statistical significance to customer satisfaction. Customers visited facilities mostly for blood pressure monitoring and to refill their medications, and counseling was the most patronized service. These call for planning multifaceted approaches to improve the care of patients with chronic disease.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241261237"},"PeriodicalIF":1.6,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11282543/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141789430","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-23eCollection Date: 2024-01-01DOI: 10.1177/23743735241263462
[This corrects the article DOI: 10.1177/23743735231151765.].
[此处更正了文章 DOI:10.1177/23743735231151765]。
{"title":"Corrigendum to \"Please keep on beating\"-Participation in a Creative Workshop Offers Unexpected Benefits to Women With Takotsubo Cardiomyopathy.","authors":"","doi":"10.1177/23743735241263462","DOIUrl":"https://doi.org/10.1177/23743735241263462","url":null,"abstract":"<p><p>[This corrects the article DOI: 10.1177/23743735231151765.].</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241263462"},"PeriodicalIF":1.6,"publicationDate":"2024-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268001/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141761509","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-23eCollection Date: 2024-01-01DOI: 10.1177/23743735241257384
Andrea Rivera-Sepulveda, Monica Hakim, Lauren Aronson, Todd F Glass, Kathryn Blake, Kenneth Alexander, Eric W Schrimshaw
The factors influencing caregivers' understanding of pediatric respiratory diseases, such as bronchiolitis, can guide patient care and the acceptability of treatment methods within the healthcare system. This study aims to identify illness perceptions and perform a needs assessment among caregivers of children diagnosed with respiratory diseases. This is a prospective, cross-sectional, questionnaire-driven study of a representative sample of caregivers whose children had an acute respiratory illness. The telephone-administered questionnaire was comprised of (1) demographic items; (2) illness perception questionnaire-revised (IPQ-R); and (3) items about personal barriers, the latter 2 of which employed a 5-point Likert response. Cronbach's alpha (α) was used to measure the internal consistency reliability for each item within the IPQ-R. The Pearson 2-tailed correlation coefficient was used to correlate questionnaire items. We included 75 caregivers whose children have been diagnosed with bronchiolitis (51%), reactive airway disease (RAD) (35%), asthma (33%), and wheezing (44%). We found no significance between the child's diagnosis and the site of recruitment. The most important components of the illness perception were illness coherence (α=0.849), psychological attributions (α=0.903), and barriers to diagnosis (α=0.633). Understanding caregivers' perceptions of respiratory diseases will lead to better treatment acceptance. We must clarify the terms used to define bronchiolitis from viral-induced wheezing, RAD, and the first asthma episode in older infants. Identifying caregivers' gaps in knowledge will help establish a cohesive approach to personalized treatment of respiratory diseases in children and their diagnosis.
{"title":"A Community-Guided Approach to Bronchiolitis: A Needs Assessment and Illness Perception Study.","authors":"Andrea Rivera-Sepulveda, Monica Hakim, Lauren Aronson, Todd F Glass, Kathryn Blake, Kenneth Alexander, Eric W Schrimshaw","doi":"10.1177/23743735241257384","DOIUrl":"https://doi.org/10.1177/23743735241257384","url":null,"abstract":"<p><p>The factors influencing caregivers' understanding of pediatric respiratory diseases, such as bronchiolitis, can guide patient care and the acceptability of treatment methods within the healthcare system. This study aims to identify illness perceptions and perform a needs assessment among caregivers of children diagnosed with respiratory diseases. This is a prospective, cross-sectional, questionnaire-driven study of a representative sample of caregivers whose children had an acute respiratory illness. The telephone-administered questionnaire was comprised of (1) demographic items; (2) illness perception questionnaire-revised (IPQ-R); and (3) items about personal barriers, the latter 2 of which employed a 5-point Likert response. Cronbach's alpha (<i>α</i>) was used to measure the internal consistency reliability for each item within the IPQ-R. The Pearson 2-tailed correlation coefficient was used to correlate questionnaire items. We included 75 caregivers whose children have been diagnosed with bronchiolitis (51%), reactive airway disease (RAD) (35%), asthma (33%), and wheezing (44%). We found no significance between the child's diagnosis and the site of recruitment. The most important components of the illness perception were illness coherence (<i>α</i>=0.849), psychological attributions (<i>α</i>=0.903), and barriers to diagnosis (<i>α</i>=0.633). Understanding caregivers' perceptions of respiratory diseases will lead to better treatment acceptance. We must clarify the terms used to define bronchiolitis from viral-induced wheezing, RAD, and the first asthma episode in older infants. Identifying caregivers' gaps in knowledge will help establish a cohesive approach to personalized treatment of respiratory diseases in children and their diagnosis.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241257384"},"PeriodicalIF":1.6,"publicationDate":"2024-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11268019/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141761508","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-14eCollection Date: 2024-01-01DOI: 10.1177/23743735241261232
Kenji Takao, Shingo Ueki, Mai Kabayama
Patient/family complaints are a valuable source of information for providing patient-oriented healthcare. This study aimed to identify and systematize patient/family complaints about healthcare services, focusing on complaints caused by "things." A qualitative descriptive study was designed. Open data of patient and family voices published on the website of university hospital were collected from 27 hospitals for the period June 2020 to August 2020. From the collected data, we excluded praise and compliments, and complaints regarding "people." The results revealed 1,476 complaints, with 1,755 codes. Patient/family complaints were categorized into five domains (access to hospital or line of flow in the hospital, outpatient, inpatient, facilities/equipment, publicity/documents), 46 categories, and 150 sub-categories. A total of 545 codes were excluded to avoid duplication: [1] 253 related to hardware, [2] 222 related to operations, and [3] 70 related to maintenance. This study may provide useful data to inform future studies using patient/family complaints to improve healthcare services for hospitals aiming to provide patient-centered care.
{"title":"Systematizing Complaints About Healthcare and Services at University Hospitals: Content Analysis of Patient/Family Letters.","authors":"Kenji Takao, Shingo Ueki, Mai Kabayama","doi":"10.1177/23743735241261232","DOIUrl":"10.1177/23743735241261232","url":null,"abstract":"<p><p>Patient/family complaints are a valuable source of information for providing patient-oriented healthcare. This study aimed to identify and systematize patient/family complaints about healthcare services, focusing on complaints caused by \"things.\" A qualitative descriptive study was designed. Open data of patient and family voices published on the website of university hospital were collected from 27 hospitals for the period June 2020 to August 2020. From the collected data, we excluded praise and compliments, and complaints regarding \"people.\" The results revealed 1,476 complaints, with 1,755 codes. Patient/family complaints were categorized into five domains (access to hospital or line of flow in the hospital, outpatient, inpatient, facilities/equipment, publicity/documents), 46 categories, and 150 sub-categories. A total of 545 codes were excluded to avoid duplication: [1] 253 related to hardware, [2] 222 related to operations, and [3] 70 related to maintenance. This study may provide useful data to inform future studies using patient/family complaints to improve healthcare services for hospitals aiming to provide patient-centered care.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241261232"},"PeriodicalIF":1.5,"publicationDate":"2024-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11179509/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-13eCollection Date: 2024-01-01DOI: 10.1177/23743735241256464
Breonny Robson, Gary Deed, Richard Ks Phoon
Chronic kidney disease (CKD) is a major cause of morbidity and mortality, contributing to approximately 20 000 deaths in 2021 in Australia. Importantly, progression of CKD can be substantially reduced if it is detected and treated early. Here we present the perspectives of a general practitioner (primary care physician), a nephrologist and a patient advocate on how the diagnosis and management of CKD in primary care could be improved. Early detection and treatment of CKD are impeded by limited patient awareness and knowledge, communication challenges between patients and doctors, and psychosocial issues, with these factors also interacting with, and exacerbating, each other. We make the following recommendations to help improve outcomes in patients with CKD: (1) identifying people at increased risk of CKD and ensuring they have a complete kidney health check (including estimated glomerular filtration rate, urine albumin-creatinine ratio and a blood pressure check) every 1-2 years; (2) using simple, nonconfrontational language and supportive resources to communicate with patients about kidney health; (3) implementing early treatment to slow the progression of CKD and avoid adverse cardiovascular disease outcomes; and (4) asking patient-orientated questions to support shared decision-making and empower patients to be active partners in their healthcare. We acknowledge that limited time is a major barrier to implementing these recommendations in primary care. Utilizing the expertise of the whole practice team, and adopting supportive technology to introduce efficiencies, are likely to be of benefit. By adopting these recommendations, we believe general practitioners have the opportunity to drive improved outcomes and quality of life for people living with CKD in Australia.
{"title":"Improving the Detection and Management of Kidney Health in Primary Care.","authors":"Breonny Robson, Gary Deed, Richard Ks Phoon","doi":"10.1177/23743735241256464","DOIUrl":"10.1177/23743735241256464","url":null,"abstract":"<p><p>Chronic kidney disease (CKD) is a major cause of morbidity and mortality, contributing to approximately 20 000 deaths in 2021 in Australia. Importantly, progression of CKD can be substantially reduced if it is detected and treated early. Here we present the perspectives of a general practitioner (primary care physician), a nephrologist and a patient advocate on how the diagnosis and management of CKD in primary care could be improved. Early detection and treatment of CKD are impeded by limited patient awareness and knowledge, communication challenges between patients and doctors, and psychosocial issues, with these factors also interacting with, and exacerbating, each other. We make the following recommendations to help improve outcomes in patients with CKD: (1) identifying people at increased risk of CKD and ensuring they have a complete kidney health check (including estimated glomerular filtration rate, urine albumin-creatinine ratio and a blood pressure check) every 1-2 years; (2) using simple, nonconfrontational language and supportive resources to communicate with patients about kidney health; (3) implementing early treatment to slow the progression of CKD and avoid adverse cardiovascular disease outcomes; and (4) asking patient-orientated questions to support shared decision-making and empower patients to be active partners in their healthcare. We acknowledge that limited time is a major barrier to implementing these recommendations in primary care. Utilizing the expertise of the whole practice team, and adopting supportive technology to introduce efficiencies, are likely to be of benefit. By adopting these recommendations, we believe general practitioners have the opportunity to drive improved outcomes and quality of life for people living with CKD in Australia.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241256464"},"PeriodicalIF":1.5,"publicationDate":"2024-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11179444/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332101","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-11eCollection Date: 2024-01-01DOI: 10.1177/23743735241259549
Megan Kellett, Hannah Baek, Taylor B Sewell
This article explores the deep impact of the COVID-19 pandemic on pediatric care volunteerism and specifically highlights the innovative responses and adaptations made by Project Sunshine, an international nonprofit organization headquartered in New York, NY. Prior to the pandemic, Project Sunshine's in-person volunteers played a critical role in providing comfort and support to hospitalized children and their families, bridging the gap between clinical treatment and patient satisfaction. However, COVID-19 brought unprecedented challenges to hospitals around the world, including widespread interruption of volunteer activities due to safety concerns and visitation restrictions. In response, Project Sunshine swiftly pivoted to virtual volunteering by launching TelePlay, an online playroom offering live interactive sessions between trained volunteers and pediatric patients. This approach addressed the immediate volunteering needs of patients during the pandemic and also extended support beyond traditional hospital settings, allowing Project Sunshine to reach children at home facing isolation and socialization challenges. Early pilot data is very encouraging: TelePlay participants were noted by their caregivers to be less anxious after a TelePlay session compared to before (p < 0.001). Additionally, the flexibility and accessibility of TelePlay have opened new avenues for volunteers to engage with their communities, transcending geographical barriers and accommodating varied schedules. As the healthcare landscape transitions back to in-person volunteerism, Project Sunshine embraces a hybrid model, offering both in-person and virtual volunteering opportunities. This flexible approach reflects the organization's commitment to helping shape the future of volunteerism to meet the evolving needs of pediatric patients and volunteers alike.
{"title":"Pediatric Care Volunteerism: Lessons from the COVID-19 Pandemic.","authors":"Megan Kellett, Hannah Baek, Taylor B Sewell","doi":"10.1177/23743735241259549","DOIUrl":"10.1177/23743735241259549","url":null,"abstract":"<p><p>This article explores the deep impact of the COVID-19 pandemic on pediatric care volunteerism and specifically highlights the innovative responses and adaptations made by Project Sunshine, an international nonprofit organization headquartered in New York, NY. Prior to the pandemic, Project Sunshine's in-person volunteers played a critical role in providing comfort and support to hospitalized children and their families, bridging the gap between clinical treatment and patient satisfaction. However, COVID-19 brought unprecedented challenges to hospitals around the world, including widespread interruption of volunteer activities due to safety concerns and visitation restrictions. In response, Project Sunshine swiftly pivoted to virtual volunteering by launching TelePlay, an online playroom offering live interactive sessions between trained volunteers and pediatric patients. This approach addressed the immediate volunteering needs of patients during the pandemic and also extended support beyond traditional hospital settings, allowing Project Sunshine to reach children at home facing isolation and socialization challenges. Early pilot data is very encouraging: TelePlay participants were noted by their caregivers to be less anxious after a TelePlay session compared to before (p < 0.001). Additionally, the flexibility and accessibility of TelePlay have opened new avenues for volunteers to engage with their communities, transcending geographical barriers and accommodating varied schedules. As the healthcare landscape transitions back to in-person volunteerism, Project Sunshine embraces a hybrid model, offering both in-person and virtual volunteering opportunities. This flexible approach reflects the organization's commitment to helping shape the future of volunteerism to meet the evolving needs of pediatric patients and volunteers alike.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241259549"},"PeriodicalIF":1.5,"publicationDate":"2024-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11177740/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-07eCollection Date: 2024-01-01DOI: 10.1177/23743735241252247
Gemmae M Fix, Jenesse Kaitz, Abigail N Herbst, Renda Soylemez Wiener, Dave Crocker, Dani Miano, Anna M Barker
Co-design provides a meaningful way to engage patients in research. However, there is limited practical guidance. We used our co-design project to identify strategies for other researchers. An ethnographic case study design was used. Data included participant observation of co-design meetings, meeting minutes, analytic fieldnotes, qualitative patient interviews, and research team member self-reflections. Additionally, we got external feedback. We analyzed data iteratively. Our team included 5 patients and 6 researchers. We identified 3 strategies to include patients in co-design: (1) Deliberately build the team, from recruiting patients to specifying roles. (2) Tailor the meeting format to thoughtfully use patients' time and expertise. (3) Disrupt traditional hierarchies, to empower patients to actively participate. Researchers seeking to include patients as team members should consider: team composition and roles, leveraging meeting formats to optimize contributions and purposefully creating a culture of collaboration, so patient expertise informs the end product. Our work provides practical guidance for researchers to incorporate patient expertise in the co-design process and meaningfully involve them in their work.
{"title":"Practical Strategies for Co-design: The Case of Engaging Patients in Developing Patient-Facing Shared-Decision Making Materials for Lung Cancer Screening.","authors":"Gemmae M Fix, Jenesse Kaitz, Abigail N Herbst, Renda Soylemez Wiener, Dave Crocker, Dani Miano, Anna M Barker","doi":"10.1177/23743735241252247","DOIUrl":"10.1177/23743735241252247","url":null,"abstract":"<p><p>Co-design provides a meaningful way to engage patients in research. However, there is limited practical guidance. We used our co-design project to identify strategies for other researchers. An ethnographic case study design was used. Data included participant observation of co-design meetings, meeting minutes, analytic fieldnotes, qualitative patient interviews, and research team member self-reflections. Additionally, we got external feedback. We analyzed data iteratively. Our team included 5 patients and 6 researchers. We identified 3 strategies to include patients in co-design: (1) Deliberately build the team, from recruiting patients to specifying roles. (2) Tailor the meeting format to thoughtfully use patients' time and expertise. (3) Disrupt traditional hierarchies, to empower patients to actively participate. Researchers seeking to include patients as team members should consider: team composition and roles, leveraging meeting formats to optimize contributions and purposefully creating a culture of collaboration, so patient expertise informs the end product. Our work provides practical guidance for researchers to incorporate patient expertise in the co-design process and meaningfully involve them in their work.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241252247"},"PeriodicalIF":1.5,"publicationDate":"2024-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11162119/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141296981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-31eCollection Date: 2024-01-01DOI: 10.1177/23743735241257385
Giles Critchley, Phylis Harvey, Rose Saunders, Simon John, Keith Todd
Telehealth clinics have been used in many specialities, including neurosurgery, to improve access for patients in rural communities. The introduction of nurse navigators involved with the patient before, during and after the clinic was evaluated. Clinics were held in a rural hospital with a nurse navigator present in the clinic with the patient, and the physician consulting remotely. A patient satisfaction survey and audit were conducted following ten telehealth clinics. Twenty-one new patients were able to be contacted out of 31 (68%) with an 11 question structured survey. Eighteen out of 21 (86%) stated they were satisfied with the quality of the clinic compared with an in-person clinic. Overall satisfaction scores of 7-10 were scored by 18/21 patients (86%) on a scale of 1-10. An estimated 10785 km of travel was saved for patients going to a rural hospital clinic rather than the neurosurgical centre. This study shows that the supportive role of nurse navigators throughout the patient telehealth clinic pathway merits further continuing evaluation.
{"title":"Evaluation of Nurse Navigator Support for Patients During Telehealth Neurosurgery Clinics.","authors":"Giles Critchley, Phylis Harvey, Rose Saunders, Simon John, Keith Todd","doi":"10.1177/23743735241257385","DOIUrl":"10.1177/23743735241257385","url":null,"abstract":"<p><p>Telehealth clinics have been used in many specialities, including neurosurgery, to improve access for patients in rural communities. The introduction of nurse navigators involved with the patient before, during and after the clinic was evaluated. Clinics were held in a rural hospital with a nurse navigator present in the clinic with the patient, and the physician consulting remotely. A patient satisfaction survey and audit were conducted following ten telehealth clinics. Twenty-one new patients were able to be contacted out of 31 (68%) with an 11 question structured survey. Eighteen out of 21 (86%) stated they were satisfied with the quality of the clinic compared with an in-person clinic. Overall satisfaction scores of 7-10 were scored by 18/21 patients (86%) on a scale of 1-10. An estimated 10785 km of travel was saved for patients going to a rural hospital clinic rather than the neurosurgical centre. This study shows that the supportive role of nurse navigators throughout the patient telehealth clinic pathway merits further continuing evaluation.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"11 ","pages":"23743735241257385"},"PeriodicalIF":1.5,"publicationDate":"2024-05-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11143838/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141200752","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}