scholarly journals Evaluation of An Online Tool About the Expected Course of Disease for Glioblastoma Patients – A Qualitative Study

2021 ◽  
Author(s):  
Eva van Diest ◽  
Wendy H Oldenmenger ◽  
Marit Eland ◽  
Walter Taal
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Information Needs ◽  
Survival Rates ◽  
Clinical Implementation ◽  
Structured Interviews ◽  
Online Tool ◽  
Course Of Disease ◽  
Perceived Quality Of Life

Abstract Background Patients with glioblastoma have a short life-expectancy, with median survival rates of nine to twelve months. Providing information about the expected course of disease can be complicated. Therefore, an online tool has been developed. The objective of this tool is to better inform patients and proxies, and decrease their uncertainties and improve their quality of life. This study aims to gather experiences of future end-users, to identify if the tool meets the previously mentioned objectives. Methods This is a qualitative study based on thematic analysis. Interviews were conducted with fifteen patient-proxy dyads. For these interviews, a combined method of think-aloud sessions and semi-structured interviews was used. Audiotapes of these interviews were transcribed verbatim and thematically analyzed. Results The analysis revealed four major themes: unmet information needs, improvement possibilities, effects of the tool and clinical implementation. Participants indicated that this tool could decrease uncertainties and increase their perceived quality of life. Also, they often mentioned that it could have a positive effect on the efficiency and quality of consultations. Conclusion Participants considered this tool to be useful and effective in decreasing uncertainties and improving the quality of life for both patients with glioblastoma and their proxies. Moreover, participants brought up that this tool could positively influence the efficiency and quality of consultations. This could lead to more patient participation and empowerment, and could therefore enhance shared decision making and timely advanced care planning.

Boys and parents’ perceptions of living with haemophilia and an inhibitor

2013 ◽  
Vol 1 (1) ◽  
pp. 17-22
Author(s):  
Anica Phillott
Keyword(s):  
Quality Of Life ◽  
Coping Mechanisms ◽  
Theory Approach ◽  
Structured Interviews ◽  
Inhibitor Development ◽  
The Past ◽  
Published Evidence ◽  
Perceived Quality Of Life ◽  
Qualitative Research Methodology

Abstract This study examined the perception of the quality of life in a small group of boys (aged 8-15) who have severe haemophilia and have also developed inhibitors and their parents. The study design was a qualitative research methodology using a phenomenology theory approach in order to gain perspectives from participants in a series of semi-structured interviews. The study showed that inhibitor development had an impact on the perceived quality of life of these boys and their families and in so doing threatened the coping mechanisms that had worked effectively for them in the past. Although there is adequate awareness among haemophilia treaters of the psychosocial impact of inhibitor development on family life, this may not always be seen as a priority when managing these boys. The study also identified gaps in the published evidence as well as scope for future study. Commentary, J Haem Pract 2014;1(1):23.

scholarly journals Dysthanasia: nursing professionals' perception

2009 ◽  
Vol 17 (4) ◽  
pp. 443-448 ◽  
Author(s):  
Milene Barcellos de Menezes ◽  
Lucilda Selli ◽  
Joseane de Souza Alves
Keyword(s):  
Quality Of Life ◽  
Content Analysis ◽  
Qualitative Study ◽  
Study Data ◽  
Structured Interviews ◽  
Pain And Suffering ◽  
One Year ◽  
Nursing Professionals

Dysthanasia means slow and painful death without quality of life. This study aimed to know whether nurses identify dysthanasia as part of the final process of the lives of terminal patients hospitalized at an adult ICU. This is an exploratory-qualitative study. Data were collected through semi-structured interviews with ten nurses with at least one year of experience in an ICU, and interpreted through content analysis. Results indicate that nurses understand and identify dysthanasia, do not agree with it and recognize elements of orthonasia as the adequate procedure for terminal patients. We conclude that nurses interpret dysthanasia as extending life with pain and suffering, while terminal patients are submitted to futile treatments that do not benefit them. They also identify dysthanasia using elements of orthonasia to explain it.

Quality of Life of College Students Living With Type 1 Diabetes

2016 ◽  
Vol 38 (12) ◽  
pp. 1595-1610 ◽  
Author(s):  
Judy Fredette ◽  
Barbara Mawn ◽  
Korey Hood ◽  
James Fain
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
Type 1 Diabetes ◽  
Perceived Quality ◽  
Valuable Insight ◽  
Structured Interviews ◽  
Perceived Quality Of Life ◽  
The Impact

The purpose of this phenomenological qualitative study was to examine the quality of life among college students living with Type 1 diabetes (T1D). Inclusion criteria included age 18 to 24, current college student, and a diagnosis of T1D for at least 1 year. Semi-structured interviews were conducted, in-person and by phone. During these interviews, college students shared stories of living with T1D and its impact on their quality of life. Three major themes emerged, which included “planning ahead,” “thinking positive,” and “seeking support.” These findings provide a better understanding of the transitional experience of living with T1D and the impact on perceived quality of life while attending college. Techniques and strategies aimed at the enhancement of perceived quality of life for college students living with T1D were identified. These findings will provide valuable insight for professionals working with this population.

scholarly journals Perceived changes to quality of life indicators following a physical activity intervention for recovering cancer patients: A qualitative study.

2016 ◽  
Vol 4 (2) ◽  
pp. 305
Author(s):  
Martyn Queen ◽  
Saul Bloxham ◽  
Phil Brown ◽  
Melissa Coyle ◽  
Ben Jane
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Psychological Health ◽  
Physical Activity Intervention ◽  
Chronic Fatigue ◽  
Theory Approach ◽  
Structured Interviews

The aim of this study was to examine the perceived changes to the quality of life (QoL) for a group of recovering cancer patients, following 6 months of physical activity.Background Evidence suggests that physical activity can improve the QoL of recovering cancer patients, reducing many of the side-effects of cancer and its related treatments, including depression, anxiety, chronic fatigue and improve physical and psychological health. Method A qualitative study with 14 mixed site cancer patients aged 43-70 (12 women, 2 men). The intervention was in 2 parts the first part was an 8-week physical activity programme, the second part related to a period of non-supervised, physical activity for 4 months (6 months in total). The Programme took place at a university in the South West of England. Semi-structured interviews with patients took place 3 times over 6 months. A grounded theory approach was used to analyse the data.Results We found that prior to the 6-month physical activity intervention many of the patients were anxious about being able to complete the initial 8 week programme. Anxieties related to low self-esteem and the chronic fatigue resulting from their cancer treatment. Consequently several patients expressed concerns about their ability to help themselves self-manage their recovery through physical activity. On completion of the intervention the majority of patients reported improvements in their perceived QoL relating to their ability to self-manage, their self-efficacy, energy levels, along with decreases in chronic fatigue.Conclusion Our study has provided valuable insights into how the perceived QoL of a group of recovering cancer patients can be improved through a combined 6-month period of supervised and independent physical activity. These findings serve as further evidence of the effectiveness of a person centred healthcare approach for recovering cancer patients.

scholarly journals From Resistance to Creation: Socio-Environmental Activism in Chile’s “Sacrifice Zones”

2021 ◽  
Vol 13 (6) ◽  
pp. 3481
Author(s):  
Katia Valenzuela-Fuentes ◽  
Esteban Alarcón-Barrueto ◽  
Robinson Torres-Salinas
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Thematic Analysis ◽  
Capital Accumulation ◽  
Local Communities ◽  
Structured Interviews ◽  
Buen Vivir ◽  
Environmental Conflicts ◽  
Industrial Projects

The last decade has witnessed the proliferation of socio-environmental conflicts across Chile, characterized by the resistance of local communities against extractive and industrial projects. Increasingly, these conflicts have revealed the multiple injustices experienced by communities living in sacrifice zones. A sacrifice zone can be defined as a segregated place where the quality of life of its communities is compromised in the name of progress and capital accumulation. By focusing on socio-environmental struggles taking place in Quintero-Puchuncaví Bay, Coronel Bay, and Hualpén-Talcahuano Bay, three highly polluted and industrialized areas in Chile, this article explores the views and practices developed by grassroots activists in their quest for resisting and moving beyond the capitalist and extractivist model of development. By conducting a thematic analysis of semi-structured interviews with 32 socio-environmental activists, this qualitative study provides a detailed account of how they understand a sacrifice zone and resist in these areas. Furthermore, it describes alternatives to capitalist and extractivist development envisioned and enacted by grassroots movements, expanding on the notions of territorial sovereignty and “buen vivir”.

scholarly journals Challenges and Perspectives on Breast Cancer Survivorship: The Journey Continues

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 96-96
Author(s):  
Victoria Raveis ◽  
Simona Kwon
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Survivor ◽  
Breast Cancer Survivors ◽  
Cancer Survival ◽  
Survival Rates ◽  
Extended Period ◽  
Health Issues ◽  
Age Related

Abstract Women have a 1-in-8 lifetime risk of breast cancer. Earlier diagnosis and treatment advances have improved 15- and 20-year survival rates. Increased survival can mean coping with the effects of cancer and its treatment over an extended period of time, while experiencing age-related changes in functioning and the emergence of other health issues. To explore breast cancer survivors’ perspectives on their issues and concerns across the life-course, focus groups were conducted with a culturally diverse sample (N=18) of survivors (72% white, 28% Black, 11% Hispanic). Participants were 44-82 years old. Most, 83% were 50 and older, 56% were 60 and older. The majority (83%) were diagnosed in their 40’s and 50’s. Two were diagnosed in their early 30’s and one at age 68. Participants reaffirmed the necessity, as a breast cancer survivor, of being a life-long health advocate on their own behalf, and the importance of being self-informed. As one woman commented: “Knowledge is power”. Survivors shared that their emergent health issues were complicated by their cancer history, and, that, as a cancer survivor, “I never stop worrying”. A widespread concern was not knowing if the health issues and co-morbidities they experienced (such as joint pain, neuropathy, tendinitis, heart disease), were age-related, a consequence of their cancer, or a late treatment effect. An overriding sentiment expressed was that clinicians have not recognized the importance of quality of life in cancer survival. As a survivor succinctly stated: “We are living longer, but we need to live long with quality of life.”

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