scholarly journals COVD-07. THE IMPACT OF COVID-19 ON PATIENTS AND CAREGIVERS AFFECTED BY BRAIN TUMORS: THE PATIENT NAVIGATOR PERSPECTIVE

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii22-ii22
Author(s):  
Kyle Walsh
Keyword(s):  
Clinical Trials ◽  
Brain Tumor ◽  
Clinical Care ◽  
Structured Interview ◽  
Patient Navigator ◽  
Structured Interviews ◽  
Social Distancing ◽  
Tumor Patient ◽  
Patient Navigators ◽  
The Impact

Abstract BACKGROUND Preliminary evidence indicates that glioma patients are at higher risk for COVID-19 complications due to systemic immunosuppression. Interruptions in cancer care may exacerbate patient and caregiver anxiety, but surveying patients/caregivers about their COVID-19 experiences is often limited by attainable sample sizes and over-reliance upon single-institution experiences. METHODS To explore how COVID-19 is impacting brain tumor patients/caregivers across the U.S., we performed semi-structured interviews with brain tumor patient navigators employed by two different 501(c)3 nonprofit organizations. A semi-structured interview guide was used, utilizing prompts and open-ended questions to facilitate dialogue. A core set of COVID-19 topics were covered, including: financial issues, coping strategies, geographic variability, variability by tumor grade/histology, disruptions in care continuity, accessing clinical trials, psychosocial issues, and end-of-life care. Interviews were audio-recorded, transcribed, and organized by discussion topic to identify emerging themes. Inductive sub-coding was completed using the constant comparison method, within and between transcripts. RESULTS/CONCLUSIONS Ten patient navigators were interviewed between April 15th and May 8th, with interviews lasting approximately one hour (range 38-77minutes). Navigators reported having contact with 183 unique brain tumor families during the pandemic (range 7–38 families per navigator). High concordance emerged across narratives, revealing important considerations for the neuro-oncology workforce. The most prominent theme was increased caregiver burden, attributed to maintaining social distancing by reducing visits from home-health aides and friends/family. A related theme that applied to both patients and caregivers was increased social isolation due to social distancing, suspension of in-person support groups, and church/temple closures. Accessing clinical trials was a recurrent issue, exacerbated by patients’ increasing unwillingness to travel. Glioblastoma patients, especially those with recurrent tumors, expressed greater reluctance to travel. Access to standard-of-care treatment was rarely interrupted, but reduced access to supportive services – especially physical and occupational therapy – was identified as an emerging COVID-related deficiency in clinical care.

scholarly journals Opportunities and challenges of incorporating clinical outcome assessments in brain tumor clinical trials

2018 ◽  
Vol 6 (2) ◽  
pp. 81-92 ◽  
Author(s):  
Emanuela Molinari ◽  
Tito R Mendoza ◽  
Mark R Gilbert
Keyword(s):  
Clinical Trials ◽  
Brain Tumor ◽  
Clinical Outcome ◽  
Clinical Trial Design ◽  
Well Being ◽  
Successful Implementation ◽  
Outcome Assessments ◽  
Tumor Studies ◽  
Clinical Outcome Assessments ◽  
The Impact

Abstract Regulatory agencies have progressively emphasized the importance of assessing broader aspects of patient well-being to better define therapeutic gain. As a result, clinical outcome assessments (COAs) are increasingly used to evaluate the impact, both positive and negative, of cancer treatments and in some instances have played a major factor in the regulatory approval of drugs. Challenges remain, however, in the routine incorporation of these measures in cancer clinical trials, particularly in brain tumor studies. Factors unique to brain tumor patients such as cognitive decline and language dysfunction may hamper their successful implementation. Study designs often relegated these outcome measures to exploratory endpoints, further compromising data completion. New strategies are needed to maximize the complementary information that COAs could add to clinical trials alongside more traditional measures such as progression-free and overall survival. The routine incorporation of COAs as either primary or secondary objectives with attention to minimizing missing data should define a novel clinical trial design. We provide a review of the approaches, challenges, and opportunities for incorporating COAs into brain tumor clinical research, providing a perspective for integrating these measures into clinical trials.

How did Autistic Children, and their Parents, Experience School Transition during the COVID-19 Pandemic?

2021 ◽  
Author(s):  
Aimee Code ◽  
Umar Toseeb ◽  
Kathryn Asbury ◽  
Laura Fox
Keyword(s):  
School Transition ◽  
School Closure ◽  
School Transitions ◽  
Autistic Children ◽  
Structured Interviews ◽  
School Closures ◽  
Social Distancing ◽  
New School ◽  
The Uk ◽  
The Impact

Due to the COVID-19 pandemic and resultant school closures, social distancing measures, and restrictions placed on routine activities, the start of the academic year in September 2020 was a unique time for those transitioning to a new school. This study aimed to explore the experiences of parents who supported autistic children making a school transition in 2020, and to examine what impact parents perceived the COVID-19 pandemic had on their child’s school transition. Emphasis was placed on identifying facilitating factors that had benefitted school transitions, and barriers, which had negatively impacted these experiences. Semi-structured interviews were carried out with 13 parents of autistic children in the UK. Reflexive thematic analysis was carried out to identify themes in interview data. Parents reported a variety of experiences, and factors that were perceived as facilitatory to some were observed to be barriers by others. For some parents, the COVID-19 pandemic negatively impacted aspects of school transitions. For example, school closure in March 2020, being unable to visit their child’s new school, and social distancing measures were discussed as being barriers to an easy transition. However, other parents identified these factors as being facilitatory for their child or reported that these circumstances created opportunities to approach the school transition in a unique, improved manner. This paper sheds light on the heterogeneity of experiences and perceptions of parents of autistic children, and highlights the need to examine the impact of COVID-19 on school transitions, including practices which may be advantageous to retain.

scholarly journals Evidence-based implementation of normal childbirth: what are the obstacles? (qualitative study)

2020 ◽  
Vol 3 (2) ◽  
pp. 115-126
Author(s):  
Rizki Amalia ◽  
Moch. Hakimi ◽  
Herlin Fitriani
Keyword(s):  
Clinical Care ◽  
Sampling Technique ◽  
Obstetric Care ◽  
Evidence Based ◽  
Independent Practice ◽  
Structured Interviews ◽  
Delivery Assistance ◽  
Quality Of Obstetric Care ◽  
The Impact

Evidence-based is a very effective strategy to improve the quality of midwifery services. One of the most frequently problems faced is the gap between midwifery practices that are in accordance with the procedures (based on evidence-based) with clinical care practices that occur in the clinic. The purpose of this study was to explore in-depth the obstacles to the implementation of evidence-based normal childbirth, which are the position of delivery, monitoring and documenting delivery by using partographs in the Independent Practice of Midwives of Gunungkidul District, Yogyakarta.This research was a qualitative research with a phenomenological descriptive approach. The participants of this study were midwives who had the Independent Midwife Practice (PMB) consisting of 7 informants. Participant selection in this study used a purposive sampling technique with convenience sampling and identification of obstacles used was the Consolidated Framework for Implementation Research (CFIR). Data collection used was semi-structured interviews and observations. Data analysis used was a thematic analysis.The interview and observation of delivery assistance is done at the Independent Midwife Practice Center (PMB). The position of delivery that was often used by patients was lithotomy and left slant, and the application of evidence-based monitoring and documentation using partograph was still not optimal. This was because there were several obstacles in its application, which were obstacles from patients, families, midwives, and obstacles from the organization. The impact of these obstacles was that it can reduce the quality of obstetric care in patients according to evidence-based. The evaluation of clinical practice based on evidence-based by the organization and the existence of feedback from patients to midwives are expected to improve the quality of service to patients.    

scholarly journals “In my age, we didn’t have the computers”: Using a complexity lens to understand uptake of diabetes eHealth innovations into primary care—A qualitative study

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254157
Author(s):  
Catherine H. Yu ◽  
Maggie McCann ◽  
Joanna Sale
Keyword(s):  
Primary Care ◽  
Decision Making ◽  
Shared Decision Making ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Structured Interview ◽  
Qualitative Description ◽  
Central Component ◽  
Shared Decision ◽  
The Impact

Background Shared decision-making is a central component of person-centred care and can be facilitated with the use of patient decision aids (PtDA). Barriers and facilitators to shared decision-making and PtDA use have been identified, yet integration of PtDAs into clinical care is limited. We sought to understand why, using the concepts of complexity science. Methods We conducted 60-minute in-depth interviews with patients with diabetes, primary care physicians, nurses and dietitians who had participated in a randomized controlled trial examining the impact of MyDiabetesPlan (an online goal-setting PtDA). Relying on a qualitative description approach, we used a semi-structured interview guide to explore participants’ experiences with using MyDiabetesPlan and how it was integrated into the clinical encounter and clinical care. Audiotapes were transcribed verbatim, then coded independently by two analysts. Findings 17 interviews were conducted (5 physicians, 3 nurses, 2 dietitians, 7 patients). Two themes were developed: (1) MyDiabetesPlan appeared to empower patients by providing tailored patient-important information which engaged them in decision-making and self-care. Patients’ use of MyDiabetesPlan was however impacted by their competing medical conditions, other life priorities and socioeconomic context. (2) MyDiabetesPlan emphasized to clinicians a patient-centred approach that helped patients assume greater ownership for their care. Clinicians’ use of MyDiabetesPlan was impacted by pre-existing clinical tools/workplans, workflow, technical issues, clinic administrative logistics and support, and time. How clinicians adapted to these barriers influenced the degree to which MyDiabetesPlan was integrated into care. Conclusions A complexity lens (that considers relationships between multiple components of a complex system) may yield additional insights to optimize integration of PtDA into clinical care. A complexity lens recognizes that shared decision-making does not occur in the vacuum of a clinical dyad (patient and clinician), and will enable us to develop a family of interventions that address the whole process, rather than individual components. Trial registration ClinicalTrials.gov NCT02379078.

“I think like if Albert Einstein and Superman had a baby, that's what it would take”: The experiences and perceptions of community and hospital healthcare professionals in a seniors’ patient navigator program

2021 ◽  
pp. 205343452110634
Author(s):  
Kristina M Kokorelias ◽  
Stephanie Posa ◽  
Tracey DasGupta ◽  
Naomi Ziegler ◽  
Sander L Hitzig
Keyword(s):  
Patient Care ◽  
Healthcare Professionals ◽  
Patient Navigation ◽  
Healthcare Providers ◽  
Albert Einstein ◽  
Patient Navigator ◽  
Role Clarity ◽  
Care Providers ◽  
Structured Interviews ◽  
Patient Navigators

Introduction The success of new patient navigation programs have mostly been described from the perspectives of patient outcomes. Little is known about how patient navigators interact with healthcare professionals in the community and in hospital settings. Methods A qualitative study using a phenomenological analysis was undertaken to depict the lived experiences of Ontario (Canada) healthcare providers who have interacted with a patient navigator. Semi-structured interviews were conducted with 42 healthcare professionals, including frontline care providers ( n = 25) and administrators ( n = 16) from hospital ( n = 21) and community care settings ( n = 21). Results Participants’ experiences were reflected in one overarching theme: role clarity and three emergent themes related to the overarching theme: (i) concerns over accountability of patient care (ii) trust (iii) attainable-but-not. Participants described an inconsistent understanding of the role of patient navigators which led to uncertainty regarding their role in patient care. The current nature of the healthcare system influenced participants’ belief in the sustainability of patient navigation model of care. Despite these experiences, participants felt that patient navigators could help healthcare providers care for patients by preventing potential crises from developing and enhancing their knowledge about services. Discussion This study expands our understanding of patient navigation programs by exploring the experiences and perceptions of healthcare professionals, thereby providing new perspectives into components that support the successful health outcomes of older adults being supported by a patient navigator. The implications of findings for research, clinical practice, and policy are described.

scholarly journals HOUT-15. BRAIN TUMOR PATIENT AND CAREGIVER SURVEY ON CLINICAL TRIALS: IDENTIFYING ATTITUDES AND BARRIERS TO PATIENT PARTICIPATION

2017 ◽  
Vol 19 (suppl_6) ◽  
pp. vi109-vi109 ◽  
Author(s):  
Amanda J Bates ◽  
Samantha A Couillard ◽  
David F Arons ◽  
W K Alfred Yung ◽  
Michael Vogelbaum ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Brain Tumor ◽  
Patient Participation ◽  
Brain Tumor Patient ◽  
Tumor Patient

scholarly journals Patient Reported Outcomes in Large Vessel Vasculitides

2021 ◽  
Vol 23 (2) ◽  
Author(s):  
Joanna Robson ◽  
Sarah Mackie ◽  
Catherine Hill
Keyword(s):  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Systemic Vasculitis ◽  
Clinical Care ◽  
Large Vessel Vasculitis ◽  
Large Vessel ◽  
Patient Reported ◽  
The Impact ◽  
Large Vessel Vasculitides ◽  
Disease Specific

Abstract Purpose of Review The goal of this paper is to review current and future uses of patient-reported outcomes in large vessel vasculitis. The large vessel vasculitides comprise Giant Cell Arteritis and Takayasu arteritis; both are types of systemic vasculitis which affect the larger blood vessels. Patient-reported outcomes (PROs) capture the impact of these diseases on health-related quality of life. Recent Findings Generic PROs such as the SF-36 are currently used to compare HRQOL of people with GCA and TAK within clinical trials and observational studies and to make comparisons with the general population and HRQoL in other diseases. The development of a disease-specific PRO for GCA is currently underway. Beyond clinical trials, there is much interest in the use of PROs within routine clinical care, particularly E-PROs for remote use. Summary Further work will be needed to complete the development of disease-specific PROs for people with large vessel vasculitis and to establish feasibility, acceptability, and utility of E-PROs.

scholarly journals Cyber Bully: Emotional Impact among UKM students

2019 ◽  
Vol 1 (4) ◽  
pp. 83-94
Author(s):  
Suriana binti Che Awang ◽  
Khadijah Alavi
Keyword(s):  
Social Media ◽  
Early Adulthood ◽  
Sampling Technique ◽  
Structured Interview ◽  
Cyber Bullying ◽  
Civic Culture ◽  
Emotional Impact ◽  
Structured Interviews ◽  
School Students ◽  
The Impact

The use of social media without civic culture among students has plagued many IPTA students in cyberbullying. Cyberbullying can be done in the uploading of cruel words, photographs and videos of the victim to hoax, incite, defame, revenge until the predators feel great and powerful. The fastest duration of all information can be disseminated in fast pace with worldwide reach. Among the factors of cyberbullying occurred in early adulthood are jealousy, discovering social media friends' attention, 'jaguar' capacity or gangster in social media. Previous studies focus more on bullying phenomena among adolescents, school students and mass media users. While, there are very few studies on the issue of cyberbullying among university students. The main objective of this study is to explore the impact of cyber bullying on UKM students. This study was conducted using a qualitative approach based on case study. Techniques of collecting research data through structured interviews in writing. 6 respondents were selected for this study using purposive sampling technique. The location of the study chosen was Universiti Kebangsaan Malaysia. Structured interview data were analyzed in a thematic manner and the findings found that there were five major implications of emotional, depression, suicidal desire, overwhelming sadness, uncertainty and uncontrolled feelings found in transcripts of study informants. Implications of this study are expected to suggest appropriate intervention and advocacy programs to social workers in handling cyber bullying cases at the Student Counseling Division, UKM.

scholarly journals Struggling With Extensive Informed Consent Procedures for Cancer Trails – Is There Even a Benefit for the Patients?

2022 ◽  
Author(s):  
Marie-Kristin Tilch ◽  
Alice Moringlane ◽  
Melanie Schranz ◽  
Matthias Theobald ◽  
Georg Hess
Keyword(s):  
Clinical Trials ◽  
Informed Consent ◽  
Cancer Treatment ◽  
Clinical Care ◽  
Structured Interview ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Informed Consent Form ◽  
Objective Understanding

Abstract PurposeInformed consent procedures in clinical trials often differ in length and complexity to those in clinical routine care. Little is known about the benefit of extensive procedures as intended in clinical trials compared to procedures in routine cancer treatment. MethodsIn two different clinical studies performed at a comprehensive cancer center, we compared patients’ comprehension and satisfaction of current informed consent procedures in routine clinical care with the level of comprehension and satisfaction of patients treated within clinical trials. Patients with a new cancer diagnosis and recent informed consent received a questionnaire about satisfaction, comprehension, time management and physician-patient relationship of the informed consent process. Patients in cohort 1 consented to cancer treatment within a clinical trial and were additionally interviewed in a structured way; patients in cohort 2 consented to “standard” chemotherapy and received a follow-up questionnaire after 6 months. ResultsIn cohort 1, 82 patients completed the questionnaire and had an additional structured interview. They were treated in 41 different trials, receiving up to 40 pages of educational material. In cohort 2, 89 patients completed the first and 52 completed the follow-up questionnaire after receiving a standard informed consent form of 6 pages. Subjective understanding and satisfaction with the information provided was equally very high. However, deficits in objective understanding were observed in both cohorts. ConclusionExtensive informed consent procedures for clinical cancer trials have not been associated with a higher level of satisfaction or measurable objective understanding, therefore the benefit seems to be limited.

scholarly journals N27 What people want! Exploring inflammatory bowel disease patients’ perspectives on healthcare professionals addressing sexual well-being

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S669-S670
Author(s):  
S Fourie ◽  
W Czuber-Dochan ◽  
C Norton
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Healthcare Professionals ◽  
Clinical Care ◽  
Holistic Approach ◽  
Well Being ◽  
Structured Interviews ◽  
Time Space ◽  
Inflammatory Bowel ◽  
The Impact

Abstract Background Inflammatory bowel disease (IBD) affects every aspect of one’s life, yet no routine assessment for the impact on sexuality is made. Our aim was to explore patients’ perspective on healthcare professionals (HCPs) addressing sexuality/sexual well-being concerns. Methods This was a qualitative narrative study. Inclusion criteria were any sexual orientation and with known IBD for longer than 18 months. Data were collected via semi structured interviews and anonymous narrative accounts submitted via Google Forms. Thematic analysis was used to analyse the data. Results Fourteen adults, 4 male and 10 female, took part. Eleven participants were from the UK, one from the USA of America and one for South Africa. The following main themes and subthemes were identified: I cannot imagine talking about my sex life (a difficult topic; there is not enough time), Those who talked about sex, talked badly (nobody volunteered information; badly handled conversations), Still living whilst unwell (sex is an important part of my life; sex issues break down relationships, medicalised body), IBD ruined my sex life (feeling unattractive; feelings of shame and embarrassment), I feel unheard (HCPs don’t open the discussion; sex not taken seriously), I’m a person, not my IBD (holistic approach to care; time, space and ways to talk about sex). The findings reflect the importance of sexual well-being to those living with IBD, the experiences of such conversations, barriers to conversations with HCPs on sexual well-being, and suggestions on how HCPs should address their unmet needs. The importance of discussing intimacy and sexuality was emphasised, as participants felt their sexual well-being was considerably affected by IBD. The majority reported that HCPs did not initiate discussions on sexual well-being, nor did they understand the impact of IBD on sexual well-being, with a distinct accent on the perceived lack of a holistic approach to their care. Therefore, participants made suggestions for practice, such as provision of information related to sexual well-being in the form of leaflets, additionally to HCPs raising the issue. Conclusion Our findings indicate that communicating on sexuality/sexual well-being is a problematic area of IBD care. HCPs must be cognisant of the sexual well-being concerns and needs of those living with IBD, who want this topic discussed routinely, as part of a holistic approach to their clinical care.

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