The Experiences of People With Advanced Cancer and Professionals Participating in a Program With Focus on Rehabilitation and Palliative Care

2022 ◽  
pp. 003022282110583
Author(s):  
Mette Raunkiær

The study’s aim is to explore the experiences of people with advanced cancer and professionals participating in a program with focus on rehabilitation and palliative care. The study is based on two adjusted rehabilitation programs for 33 people with advanced cancer and 12 professionals. An observational study was conducted among the participants and two focus group interviews with 10 professionals. The analytic themes were “Lightness and happiness to gain control in everyday life,” “Community and closeness,” and “Training as a happiness and changing agent.” The activities had to support physical functions and everyday activities promoting body identity and well-being as well as emotions like closeness, lightness, and happiness in groups with like-minded people and at home with a partner and other family members. These activities and theory of emotions and body can expand the understanding of palliative care and rehabilitation as separated or integrated perspectives theoretical and in practice.

2014 ◽  
Vol 05 (01) ◽  
pp. 127-152 ◽  
Author(s):  
E. Sundvall ◽  
K.R. Gøeg ◽  
A.R. Højen

SummaryInconsistent use of SNOMED CT concepts may reduce comparability of information in health information systems. Terminology implementation should be approached by common strategies for navigating and selecting proper concepts. This study aims to explore ways of illustrating common pathways and ancestors of particular sets of concepts, to support consistent use of SNOMED CT and also assess potential applications for such visualizations.The open source prototype presented is an interactive web-based re-implementation of the terminology visualization tool TermViz that provides an overview of concepts and their hierarchical relations. It provides terminological features such as interactively rearranging graphs, fetching more concept nodes, highlighting least common parents and shared pathways in merged graphs etc.Four teams of three to four people used the prototype to complete a terminology mapping task and then, in focus group interviews, discussed the user experience and potential future tool usage. Potential purposes discussed included SNOMED CT search and training, consistent selection of concepts and content management.The evaluation indicated that the tool may be useful in many contexts especially if integrated with existing systems, and that the graph layout needs further tuning and development.Citation: Højen AR, Sundvall E, Gøeg KR. Methods and applications for visualization of SNOMED CT concept sets. Appl Clin Inf 2014; 5: 127–152http://dx.doi.org/10.4338/ACI-2013-09-RA-0071


2004 ◽  
Vol 2 (3) ◽  
pp. 243-253 ◽  
Author(s):  
CHERYL L. NEKOLAICHUK ◽  
EDUARDO BRUERA

Objective:The purpose of this study was to gather validity evidence for an innovative experience of hope scale, theHope Differential-Short (HDS), and evaluate its clinical utility for assessing hope in advanced cancer patients.Methods:A consecutive sampling approach was used to recruit 96 patients from an inpatient tertiary palliative care unit and three hospice settings. Each participant completed an in-person survey interview, consisting of the following measures: HDS (nine items), Herth Hope Index (HHI), hope visual analog scale (Hope-VAS) and Edmonton Symptom Assessment System (ESAS).Results:Using factor analytic procedures, a two-factor structure for the HDS was identified, consisting ofauthentic spirit(Factor I) andcomfort(Factor II). The HDS factors had good overall internal consistency (α = 0.83), with Factor I (α = 0.83) being higher than Factor II (α = 0.69). The two factors positively correlated with the HHI, Hope-VAS, and one of the ESAS visual analog scales, well-being (range: 0.38 to 0.64) and negatively correlated with depression and anxiety, as measured by the ESAS (range: −0.25 to −0.42).Significance of results:This is the first validation study of the HDS in advanced cancer patients. Its promising psychometric properties and brief patient-oriented nature provide a solid initial foundation for its future use as a clinical assessment measure in oncology and palliative care. Additional studies are warranted to gather further validity evidence for the HDS before its routine use in clinical practice.


2016 ◽  
Vol 6 (2) ◽  
pp. 115
Author(s):  
Premkumar Balaraman ◽  
Priya Kamalakannan

Purpose: The main objective of the paper is on assessing the global aerospace industry as well as Indian scenario, and attempts to assess the skill gaps and training needs of Indian aerospace industry.  Design/methodology/approach: The study is qualitative in nature, and employs wide array of qualitative tools which includes desktop study, focus group interviews and secondary sources of information. Around 10 focus groups were used in the study, with each focus group having a minimum of 6 members of experts in the aerospace and allied industries. The study evolved into a 2 staged one, with the first study elucidating the growing importance and potential of aerospace industry, justifying the significance to take forward the second part of the study. And the second study specifically focuses on skill gaps and training needs.Findings and Originality/value: The Study yields varied results on existing generic expectations of aerospace industry, specific needs of aerospace industry, identification of aerospace job categories unique to aerospace industry, key issues of training in Indian scenario and recommendations. The paper in summary reflects the current scenario of aerospace industry potentials for India and its likely impact on skills gap and training needs.Practical implications: Skills gap is a significant gap between an organization’s current capabilities and the skills it needs to achieve its goals. As a number of Global forecasts project, India as an emerging aviation market, the skill gaps in this sector is predicted to be huge and necessitates the study on assessing the skill gaps and its allied training needs.Originality/value: The Study is highly original and first one of its kind in reflecting the current situation of the skills gap and training needs in Indian Aerospace industry. The focus group interviews were conducted with the experts at various levels in the industyr without any bias yielding valid and realtime data for the research.


2004 ◽  
Vol 65 (4) ◽  
pp. 154-160 ◽  
Author(s):  
Mark A. Spidel ◽  
Marie-Claude Paquette ◽  
J. Dru Marshall ◽  
Rhonda C. Bell ◽  
Linda J. McCargar

Healthy eating and active living have become key concepts in health promotion, and, increasingly, the two messages are being combined. Dietitians are in an ideal position to promote physical activity as an adjunct to nutrition counselling. Focus group interviews were used to identify dietitians’ perceptions and needs related to incorporating active living messages into their practices. Six focus groups, involving 42 participants (40 registered dietitians and two dietetic interns), were conducted in cities throughout Alberta. Issues explored during the interviews included the dietitian's role in promoting active living, barriers to promoting physical activity, opportunities for collaboration between dietitians and exercise professionals, and dietitians’ perceived needs for integrating active living messages into their practices effectively. Findings indicate strong support for incorporating active living messages into nutrition counselling. However, lack of knowledge was identified as a barrier to dietitians’ proactive role, and concerns were raised about public and professional perceptions if dietitians counselled on this issue. Participants felt that they required additional knowledge and training in physical activity in order to promote it effectively. Development and implementation of programs designed to meet these needs would help dietitians integrate active living messages into their practices.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S774-S775 ◽  
Author(s):  
Anna Brorsson ◽  
Louise Nygard ◽  
annika Ohman

Abstract People with dementia value staying active and continuing with their everyday lives in public space, however there is a lack of knowledge about how they experience accessibility, problematic situations and how to manage these situations. The aim is to illuminate experiences of accessibility in public space in people with dementia with focus on places, activities and problematic situations. A Grounded theory approach was used in the thesis with multiple data collection methods (interviews, focus group interviews, observations and visual methods). Findings show that having access to everyday activities at different places in the neighbourhood was very important for the participants when they perceived themselves as being a part of the society and being active and independent persons. Engaging in familiar activities in familiar places was important. However, their activity radii in the community became smaller. The findings inspired the development of the questionnaire Participation in Activities and Places Outside Home.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 19-19
Author(s):  
YuJung Kim ◽  
Yi Zhang ◽  
Ji Chan Park ◽  
David Hui ◽  
Gary B. Chisholm ◽  
...  

19 Background: The Eastern Cooperative Oncology Group (ECOG) performance status (PS) is one of the most commonly used assessment tools among oncologists and palliative care specialists caring advanced cancer patients. However, the inter-observer difference between the oncologist and palliative care specialist has never been reported. Methods: We retrospectively reviewed the medical records of all patients who were first referred to an outpatient palliative care clinic in 2013 and identified 278 eligible patients. The ECOG PS assessments by palliative care specialists, nurses, and oncologists, and the symptom burden measured by Edmonton Symptom Assessment Scale (ESAS) were analyzed. Results: According to the pairwise comparisons using Sign tests, palliative care specialists rated the ECOG PS grade significantly higher than oncologists (median 0.5 grade, P<0.0001) and nurses also rated significantly higher (median 1.0 grade, P<0.0001). The assessments of palliative care specialists and nurses were not significantly different (P=0.10). Weighted kappa values for inter-observer agreement were 0.26 between palliative care specialists and oncologists, and 0.61 between palliative care specialists and nurses. Palliative care specialists’ assessments showed a moderate correlation with fatigue, dyspnea, anorexia, feeling of well-being, and symptom distress score measured by ESAS. The ECOG PS assessments by all three groups were significantly associated with survival (P<0.001), but the assessments by oncologists could not distinguish survival of patients with PS 2 from 3. Independent predictors of discordance in PS assessments between palliative care specialists and oncologists were the presence of an effective treatment option (odds ratio [OR] 2.39, 95% confidence interval [CI] 1.09-5.23) and poor feeling of well-being (≥4) by ESAS (OR 2.38, 95% CI 1.34-4.21). Conclusions: ECOG PS assessments by the palliative care specialists and nurses were significantly different from the oncologists. Systematic efforts to increase regular interdisciplinary meetings and communications might be crucial to bridge the gap and establish a best care plan for each advanced cancer patients.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 190-190
Author(s):  
David Hui ◽  
Omar M. Shamieh ◽  
Carlos Eduardo Paiva ◽  
Pedro Emilio Perez-Cruz ◽  
Mary Ann Muckaden ◽  
...  

190 Background: PSG is a novel measure to assess treatment response in symptom management. In this multicenter prospective longitudinal observational study, we examined the PSG for 10 common symptoms in patients with advanced cancer, and identified the factors associated with PSG intensity and PSG response. Methods: We enrolled patients with advanced cancer seen at 5 outpatient palliative care clinics (USA, Jordan, Brazil, Chile and India). We assessed the intensity of 10 symptoms using the Edmonton Symptom Assessment Scale at first consultation visit and then a second visit 14-34 days later. We also assessed the PSG by asking patients “At what level would you feel comfortable with this symptom?” using the same 0-10 numeric rating scale for each symptom. Response was defined as symptom intensity ≤ PSG. We used multivariate logistic regression to determine factors associated with PSG intensity and PSG response. Results: 728 patients were enrolled from 5 palliative care clinics. The average age was 57 (range 19-85), 361 (50%) were female, and 29 (31%) were White. The medianPSG was 1/10 for nausea, 2/10 for depression, anxiety, drowsiness, well-being, dyspnea and sleep, and 3/10 for pain, fatigue, and appetite. In multivariate logistic regression, Asian ethnicity (odds ratio [OR] 2.4-8.2, P < 0.001), CAGE positivity (OR 1.7-2.3, P < 0.05) and higher baseline symptom intensity (ORs 1.08-1.15 per point, P < 0.03) were associated with PSG ≥ 2 for essentially all symptoms. At visit 2, 34%-73% of patients had a PSG response, which represents a significant improvement compared to the first visit (P < 0.05 except for depression, drowsiness and well-being). PSG response was associated with baseline PSG intensity (ORs 1.3-1.5 per point, P < 0.001) and ethnicity (P < 0.02) for physical symptoms, and male sex (ORs 1.45-1.65, P < 0.02) for psychological symptoms. Conclusions: PSG was 3 or lower for a majority of patients, and varied according to ethnicity, alcoholism and symptom intensity. PSG response allows clinicians and researchers to tailor treatment goals, while adjusting for individual differences in scale interpretation and factors associated with symptom response.


2017 ◽  
Vol 26 (4) ◽  
pp. e12677 ◽  
Author(s):  
A. A. Martoni ◽  
S. Varani ◽  
B. Peghetti ◽  
D. Roganti ◽  
E. Volpicella ◽  
...  

2021 ◽  
Vol 9 (8) ◽  
Author(s):  
Marta Ibáñez ◽  
María Vicuña ◽  
Luis Málaga ◽  
Diana Vega

Anemia is an important condition related with symptoms in the later stages of disease; according to World Health Organization its prevalence is between 68-77% in patients with advanced cancer. There is no specific clinical guideline and we do not have clear evidence of the effect of blood transfusions in palliative care. Objective: Understand indicators and complications of the transfusions on advanced cancer patients. Methodology: In 2019 a systematic review on PubMed and Cochrane took place, using the key words: Palliative care AND Blood transfusion; analyzing: Type of study; sample size; Pathologies; transfusion criterion; Transfusions benefits; side effects; Survival; and amount of transfused concentrates. Results: 81 articles selected, adding 6 after a full text reading. For the most part, patients with solid tumors are described and some with no oncology pathology. The symptoms indicated by the transfusion are: Fatigue, dyspnea, asthenia, headache and/or brisk bleeding. Transfused unit’s average was 2 units. Only two studies present a post-transfusion recovery and less than half display information as to associated mortality. Conclusions: There is no consensus regarding the transfusion indication. The asthenia recovery, well-being, and quality of life based on subjective criteria, are the main effects described. More studies are required.


2021 ◽  
Vol 12 ◽  
Author(s):  
Anke Snoek ◽  
Boukje A. G. Dijkstra ◽  
Wiebren Markus ◽  
Margreet Van der Meer ◽  
Guido De Wert ◽  
...  

Parental alcohol dependency is associated with risks for the well-being of their children. However, guiding these families to support is often complicated. We interviewed 10 alcohol dependent parents, and held 3 focus group interviews with child welfare social workers, and alcohol and other drug workers. We identified a reluctance to act among professional and non-professional bystanders. Family members, neighbours, teachers, and general practitioners are often aware of parental drinking problems, but are reluctant to discuss them with the parents or to alert services designed to support families. The aim of this paper is to share the experiences of parents and show that parents appreciate interventions if done in a certain manner. Although parents were reluctant to discuss their drinking problem, they considered these problems as symptoms of underlying severe distress. They were highly motivated to get help for these underlying problems and wondered why they were not questioned about their distress by those around them. The silence of others reinforced pre-existing feelings of worthlessness and hopelessness. In this paper we analyse other's hesitation to intervene as a form of the bystander effect, and make suggestions on how this bystander effect can be overcome.


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