scholarly journals ‘It feels it’s wasting whatever time I’ve got left’: A qualitative study of living with treatable but not curable cancer during the COVID-19 pandemic

2021 ◽  
pp. 026921632110494
Author(s):  
Eloise Radcliffe ◽  
Aysha Khan ◽  
David Wright ◽  
Richard Berman ◽  
Sara Demain ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Self Management ◽  
Emotional Wellbeing ◽  
Complex Needs ◽  
Face To Face ◽  
Life Threatening ◽  
Informal Carers ◽  
Living With Cancer ◽  
The Impact ◽  
Risk Reducing

Background: People living with cancer that is treatable but not curable have complex needs, often managing health at home, supported by those close to them. Challenges are likely to be exacerbated during the COVID-19 pandemic and the risk-reducing measures introduced in response. The impact of COVID-19 on those living with incurable, life-threatening conditions is little understood. Aim: To investigate the experiences and identify the impact of the COVID-19 pandemic for people living with treatable not curable cancer and their informal carers. Design: Qualitative semi-structured phone interviews were conducted with 21 patients living with cancer that is treatable but not curable and 14 carers. Setting/ participants: Participants were part of a larger longitudinal qualitative study (ENABLE) on supported self-management for people living with cancer that is treatable but not curable. Results: The COVID-19 pandemic magnified uncertainty and anxiety and led to loss of opportunities to do things important to patients in the limited time they have left to live. Lack of face-to-face contact with loved ones had a significant impact on patients’ and carers’ emotional wellbeing. Carers experienced increased responsibilities but less access to formal and informal support and respite. While changes to treatment led to some concern about longer-term impact on health, most patients felt well-supported by healthcare teams. Conclusion: The study provides rich insights into the nature of challenges, uncertainty and lost opportunities resulting from the COVID-19 pandemic for patients and carers living with cancer that is treatable but not curable, which has wider resonance for people living with other life-limiting conditions.

Everyday Experience of Front-Line Professionals and In/Formal Carers

2012 ◽  
Vol 2 (3) ◽  
pp. 27-39 ◽  
Author(s):  
Henglien Lisa Chen
Keyword(s):  
Older People ◽  
Needs Assessment ◽  
Well Being ◽  
Care Needs ◽  
Term Care ◽  
Face To Face ◽  
Care Services ◽  
Care Systems ◽  
Informal Carers ◽  
The Impact

To address the risks to families of the availability of care for their older family members, this paper explores the impact of different care systems on the way that relevant care actors contribute to the long-term care of older people. It is based on an empirical study of the care needs assessment and care provision in England, the Netherlands and Taiwan. The participants in the study include 143 care actors at national, regional and local levels across the countries. It found that the objective of providing care needs is similar in each of the countries studied. However, the everyday life of professionals and in/formal carers differs based on the care culture and care policy in each country. Overall, care professionals and formal carers experience satisfaction in their caring role when sufficient time is available for them to work with individuals. Face-to-face contact with older people is important to care professionals if adequate needs assessment could be performed. Helping informal carers extend their ability to carry out their role may improve their well-being as carers and reduce the demand for formal care services.

scholarly journals Student nurses’ experiences of incivility and the impact on learning and emotional wellbeing

2017 ◽  
Vol 8 (4) ◽  
pp. 102 ◽  
Author(s):  
Julie C. Vuolo
Keyword(s):  
Nursing Education ◽  
Interpretative Phenomenological Analysis ◽  
Student Nurses ◽  
Theory And Practice ◽  
Negative Consequences ◽  
Emotional Wellbeing ◽  
Face To Face ◽  
The United Kingdom ◽  
The Impact ◽  
The Invisible

Background: Incivility is the display of intimidating, rude, disruptive or undesirable behaviours. Incivility in nursing has the potential to impact on the learning environment, student wellbeing and patient outcomes. Although it is a globally recognised phenomenon, relatively little is known about it in the context of nurse education in the United Kingdom, where the students’ time is divided equally between theory and practice and a nurse mentor is allocated to each student when on clinical placement.Methods: A phenomenological qualitative design was used to explore the experiences of ten student nurses studying on a three year degree level pre-registration (pre-licensure) nursing programme. Data was collected by in-depth, semi-structured, face-to-face interviews which were tape-recorded and transcribed verbatim. Thematic analysis was conducted using Interpretative Phenomenological Analysis as a framework.Results: Student nurses can experience incivility in both classroom and clinical settings with negative consequences in terms of learning and personal wellbeing. Four superordinate (main) themes (Knowing-Not Knowing/Positioning/The Invisible Student/Distraction) were identified along with a further fifteen subordinate themes which included misuse, being nameless and feeling a burden.Conclusions: These findings add further to our understanding of incivility in nursing education and specifically the potential for incivility to impact on learning and students’ emotional wellbeing. Incivilities related to ‘the Invisible Student’ and ‘Knowing-Not Knowing’ are particularly worthy of further exploration as they reveal a hitherto unappreciated dimension of this complex, globally recognised phenomena. 

scholarly journals Decision-making dilemmas of paediatricians: a qualitative study in Japan

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e026579
Author(s):  
Momoko Sasazuki ◽  
Yasunari Sakai ◽  
Ryutaro Kira ◽  
Naoko Toda ◽  
Yuko Ichimiya ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Professional Education ◽  
Best Interests ◽  
Complex Structures ◽  
Social Consensus ◽  
Face To Face ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Five Elements

ObjectiveTo delineate the critical decision-making processes that paediatricians apply when treating children with life-threatening conditions and the psychosocial experience of paediatricians involved in such care.DesignWe conducted semistructured, individual face-to-face interviews for each participant from 2014 to 2015. The content of each interview was subjected to a comprehensive qualitative analysis. The categories of dilemma were extracted from a second-round content analysis.ParticipantsParticipants were board-certified paediatricians with sufficient experience in making decisions in relation to children with severe illnesses or disabilities. We repeated purposive sampling and analyses until we reached saturation of the category data.ResultsWe performed interviews with 15 paediatricians. They each reported both unique and overlapping categories of dilemmas that they encountered when making critical decisions. The dilemmas included five types of causal elements: (1) paediatricians’ convictions; (2) the quest for the best interests of patients; (3) the quest for medically appropriate plans; (4) confronting parents and families and (5) socioenvironmental issues. Dilemmas occurred and developed as conflicting interactions among these five elements. We further categorised these five elements into three principal domains: the decision-maker (decider); consensus making among families, colleagues and society (process) and the consequential output of the decision (consequence).ConclusionsThis is the first qualitative study to demonstrate the framework of paediatricians’ decision-making processes and the complex structures of dilemmas they face. Our data indicate the necessity of establishing and implementing an effective support system for paediatricians, such as structured professional education and arguments for creating social consensus that assist them to reach the best plan for the management of severely ill children.

scholarly journals Digital Disruption in the COVID-19 Era: The Impact on Learning and Students’ Ability to Cope with Study in an Unknown World

2021 ◽  
Vol 12 (2) ◽  
Author(s):  
Trixie James ◽  
Gabiela Toth ◽  
Melissa Tomlins ◽  
Brijesh Kumur ◽  
Kerry Bond
Keyword(s):  
Online Learning ◽  
Emotional Wellbeing ◽  
Learning Context ◽  
Learning And Teaching ◽  
Face To Face ◽  
Household Dynamics ◽  
New Challenges ◽  
Digital Disruption ◽  
The University ◽  
The Impact

The COVID-19 pandemic will forever be known as a disruptive dilemma that impacted many industries in Australia.  For the university sector, sudden lockdown and social distancing rules resulted in an acceleration in the provision of learning and teaching via online platforms, creating new challenges for students and educators. This project explored the ways in which an enabling course supported students through the forced transition from face-to-face classes to online learning due to the COVID-19 restrictions, and the students’ ability to adjust to the disruption caused by the pandemic. This unexpected change provided the opportunity to explore how enabling students perceived this experience and the effect it had on their ability to complete their units of study.  This paper presents findings on the impact that the abrupt transition to online learning had on the students’ educational experience and on their psychological and emotional wellbeing. It was found that most students experienced increased stress due to the changes in household dynamics, responsibilities and a different learning context, yet many reported improved study and technological skills, as well as an improved awareness of their ability to cope with change.  

Health literacy in Israel – from measurement to intervention: Two case studies

2020 ◽  
Vol 40 (1-2) ◽  
pp. 17-25
Author(s):  
Diane Levin-Zamir ◽  
Orna Baron-Epel
Keyword(s):  
Health Literacy ◽  
Case Studies ◽  
Self Management ◽  
Childhood Immunization ◽  
Community Media ◽  
Cultural Appropriateness ◽  
Face To Face ◽  
Health Literacy Measurement ◽  
The Impact ◽  
Broad Approach

This report focuses on opportunities, challenges and outcomes of health literacy related interventions in Israel, based on health literacy measurement. The importance of a system’s and community approaches are discussed, as is cultural appropriateness. Two case studies are highlighted - the first on childhood immunization and the second on self-management of chronic health situations. In the second example, a combination of community, media, digital, and face-to-face interventions comprise a broad approach to intervention. The impact and some findings are presented, including conclusions derived from each initiative.

scholarly journals Quality of Life in Women with Urinary Incontinence Seeking Care Using E-Health

2021 ◽  
Author(s):  
Ylva Åström ◽  
Ina Asklund ◽  
Anna Lindam ◽  
Malin Sjöström
Keyword(s):  
Quality Of Life ◽  
Urinary Incontinence ◽  
Short Form ◽  
Self Management ◽  
Face To Face ◽  
International Consultation ◽  
Urinary Tract Symptoms ◽  
Specific Factors ◽  
The Impact

Abstract Background Quality of life (QoL) in women with urinary incontinence (UI) is mainly affected by severity of UI, but also by, for example, UI subtype, comorbidity, age, and socioeconomic status. Using e-health to provide treatment for UI is a new method. In this study we investigate what factors have the highest impact on QoL in women who turned to e-health for self-management of UI. Methods Baseline data from three randomized controlled trials (RCT) for evaluating e-health treatments for UI were used, including 373 women with stress urinary incontinence (SUI), and 123 women with urgency/mixed UI (UUI/MUI). All participants were recruited online, with no face-to-face contact. We used the questionnaires International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form (ICIQ-UI SF) to measure UI severity, and ICIQ Lower Urinary Tract Symptoms Quality of Life (ICIQ-LUTSqol) to measure condition-specific QoL. To evaluate factors impacting on QoL, a linear regression model was used. Results The mean ICIQ-LUTSqol score was 34.9 (SD 7.6). The ICIQ-UI SF score (0-21) affected the ICIQ-LUTSqol (19-76), with an adjusted mean increase of 1.5 for each 1.0 increase in the overall ICIQ-UI SF score (p <0.001). UUI/MUI gave an adjusted mean increase of 2.5 in ICIQ-LUTSqol score compared with SUI (p <0.001). Conclusion As in women seeking other methods of care for UI, a decreased QoL was found in those who turned to e-health for self-management of UI. The impact of condition-specific factors on their QoL was slightly lower than that of women with UI who sought help in ordinary care, suggesting that e-health might reach a new group of women in need of treatment. Severity of the leakage had greater impact on QoL than type of UI.

scholarly journals Experience of living with type 1 diabetes in a low-income country: a qualitative study from Liberia

BMJ Open ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. e049738
Author(s):  
Alma J Adler ◽  
Celina Trujillo ◽  
Leah Schwartz ◽  
Laura Drown ◽  
Jacquelin Pierre ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Qualitative Study ◽  
Economic Impact ◽  
Low Income ◽  
Sub Saharan Africa ◽  
Self Management ◽  
Diabetes Distress ◽  
Low Middle Income Countries ◽  
The Impact

IntroductionWhile epidemiological data for type 1 diabetes (T1D) in low/middle-income countries, and particularly low-income countries (LICs) including Liberia is lacking, prevalence in LICs is thought to be increasing. T1D care in LICs is often impacted by challenges in diagnosis and management. These challenges, including misdiagnosis and access to insulin, can affect T1D outcomes and frequency of severe complications. Despite the severe nature of T1D and growing burden in sub-Saharan Africa, little is currently known about the impact of T1D on patients and caregivers in the region.MethodsWe conducted a qualitative study consisting of interviews with patients with T1D, caregivers, providers, civil society members and a policy-maker in Liberia to better understand the psychosocial and economic impact of living with T1D, knowledge of T1D and self-management, and barriers and facilitators for accessing T1D care.ResultsThis study found T1D to have a major psychosocial and economic impact on patients and caregivers, who reported stigma, diabetes distress and food insecurity. Patients, caregivers and providers possessed the knowledge necessary to effectively manage T1D but insufficient community awareness leads to delayed diagnosis, often in an emergency department. Most patients reported receiving free services and materials, though the cost of transportation to clinic visits and recommended foods is a barrier to disease management. Many providers noted the lack of national T1D-specific guidelines and registries. Policy-makers reported a lack of prioritisation of and resources for T1D. These barriers, combined with scarcity and expense of appropriate foods, pose severe barriers for self-management of T1D.ConclusionT1D was found to have a significant impact on patients and caregivers, and informants identified several key individual and systems-level barriers to effective T1D care in Liberia. Addressing these concerns is vital for designing sustainable and effective programmes for treating patients living with T1D.

Acceptability of Serious Games in Pediatric Asthma Education and Self-Management: Qualitative study with a consensual qualitative design (Preprint)

2021 ◽  
Author(s):  
Nicole Silva-Lavigne ◽  
Alena Valderrama ◽  
Sandra Pelaez ◽  
Myriam Bransi ◽  
Fabio Balli ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Focus Groups ◽  
Support System ◽  
Serious Games ◽  
Self Management ◽  
Asthma Education ◽  
Asthma Knowledge ◽  
Children With Asthma ◽  
The Impact

BACKGROUND Asthma is the most common chronic pediatric disease. Despite existing tools to manage asthma, 40-55% of children with asthma suffer from uncontrolled asthma. Serious games (SGs) represent a novel approach in promoting asthma education and self-management for children. OBJECTIVE In this qualitative study with an embedded quantitative design, we used focus groups and questionnaires to describe the perceived role of SGs in different aspects of asthma self-management by children and their parents. These aspects include asthma perception and knowledge, the impact of asthma and barriers to asthma self-management, and the support system for asthma self-management. METHODS Five children with asthma and their parents were invited to participate during an organized gaming session. Children and their parents filled out a pre-gaming questionnaire on their medical history and asthma knowledge. They were then invited to test four original SGs prototypes, after which the children answered a post-gaming questionnaire on their asthma knowledge and perception of the SGs. Children and their parents subsequently participated in parallel focus groups which were video- and/or audio-recorded, transcribed verbatim, and analyzed by reaching consensus among members of the research team. RESULTS The mean age of the children was 10.3 year, with 20% being male. Qualitative data from the transcripts were coded into three separate domains: 1) asthma self-management perception and knowledge, 2) impact of asthma and barriers to asthma self-management, and 3) support system for asthma self-management. We specifically explored the perceived roles of SGs within each of these domains. A key takeaway message was identified for each of these three domains: 1) Heterogeneity of asthma knowledge and the ability of SGs to encourage knowledge transfer through games, 2) Consequences and limitations of asthma and the ability of SGs to allow for identification and management of real-life situations through games, and 3) Insufficient support system and the ability of SGs to encourage playing with others for support and shared knowledge. CONCLUSIONS Our study explored the role of SGs in the self-management of asthma as perceived by children and their parents. Our findings support the acceptability of SGs in asthma education and self-management in pediatrics and the necessity for future development in this field.

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