The cancer care observation: an empathy training experience

2020 ◽  
pp. 103985622095646
Author(s):  
Justin Dwyer ◽  
Clare O’Callaghan ◽  
Margaret Ross
Keyword(s):  
Cancer Treatment ◽  
Cancer Care ◽  
Hospital Care ◽  
Qualitative Description ◽  
Structured Interviews ◽  
Training Experience ◽  
Empathy Training ◽  
Role Identities ◽  
Professional Boundaries ◽  
Patients Experience

Objective: A ‘cancer care observation’ (CCO) empathy training is described. This study examined psychiatry trainees’ experience of CCO and cancer patients’ experience of being observed. Method: Trainees were paired with consenting patients undergoing cancer treatment; they observed a number of cancer treatment sessions and chronicled their experiences. The observations were discussed in supervision. Semi-structured interviews were conducted with trainees and observed patients. Observation journals and transcribed interviews were analysed using qualitative description. Results: Seven trainees participated. Three themes emerged: patients used trainees to support themselves while trainees struggled with role identities; CCO extends trainees’ professional awareness and can benefit patients; and staff reactions were mixed. Trainees developed wide-ranging, empathic insights into cancer and hospital care experiences. No patient regarded CCO as intrusive. Conclusions: Trainees garnered insights from CCO as they generated clinical hypotheses, learnt about professional boundaries and gained first-hand experience of unconscious mental processes based on their empathic connections. CCO lends itself to psychiatry and, potentially, other medical trainees.

scholarly journals Engagement in HIV Care and Access to Cancer Treatment Among Patients With HIV-Associated Malignancies in Uganda

2019 ◽  
pp. 1-8
Author(s):  
Daniel H. Low ◽  
Warren Phipps ◽  
Jackson Orem ◽  
Corey Casper ◽  
Rachel A Bender Ignacio
Keyword(s):  
Cancer Treatment ◽  
Cancer Care ◽  
Barriers To Care ◽  
Sub Saharan Africa ◽  
Hiv Care ◽  
Structured Interviews ◽  
Cancer Symptoms ◽  
Initial Symptoms ◽  
Hiv And Cancer ◽  
Engagement In Hiv Care

PURPOSE Health system constraints limit access to HIV and cancer treatment programs in sub-Saharan Africa. Limited access and continuity of care affect morbidity and mortality of patients with cancer and HIV. We assessed barriers in the care cascade of comorbid HIV and cancer. PATIENTS AND METHODS Structured interviews were conducted with 100 adult patients with HIV infection and new diagnoses of cancer at the Uganda Cancer Institute. Participants completed follow-up questionnaires after 1 year to assess ongoing engagement with and barriers to care. RESULTS The median time from new-onset cancer symptoms to initiation of cancer care at the Uganda Cancer Institute was 209 days (interquartile range, 113 to 384 days). Persons previously established in HIV care waited less overall to initiate cancer care ( P = .04). Patients established in HIV care experienced shorter times from initial symptoms to seeking of cancer care ( P = .02) and from seeking of care to cancer diagnosis ( P = .048). Barriers to receiving care for HIV and cancer included difficulty traveling to multiple clinics/hospitals (46%), conflicts between HIV and cancer appointments (23%), prohibitive costs (21%), and difficulty adhering to medications (15%). Reporting of any barriers to care was associated with premature discontinuation of cancer treatment ( P = .003). CONCLUSION Patients with HIV-associated malignancies reported multiple barriers to receiving care for both conditions, although knowledge of HIV status and engagement in HIV care before presentation with malignancy reduced subsequent time to the start of cancer treatment. This study provides evidence to support creation and evaluation of integrated HIV and cancer care models.

scholarly journals Seeking cancer treatment for their children: experience of parents from areas distant from Lima-Peru

2021 ◽  
Vol 42 ◽  
Author(s):  
Gladys Carmela Santos Falcón ◽  
Lili Ana Ordoñez Espinoza ◽  
María del Carmen Velandres Siles ◽  
Roberto Zegarra Chapoñan ◽  
Jhon Alex Zeladita Huaman
Keyword(s):  
Cancer Treatment ◽  
Health Professionals ◽  
Cancer Care ◽  
Qualitative Approach ◽  
Access To Health Services ◽  
Structured Interviews ◽  
Children With Cancer ◽  
Remote Areas ◽  
Access To Health ◽  
Personal Experiences

ABSTRACT Objective: To understand the experiences of parents of children with cancer who come from areas distant from Lima-Peru during the search for cancer treatment for their children. Method: A descriptive-exploratory qualitative approach study. Focus groups and semi-structured interviews were carried out. The sample consisted of 18 parents who come from remote areas from Lima who attended specialized hospitals. The qualitative analysis was of thematic content, proposed by Minayo. Results: Three categories emerged: Accessing cancer care in Lima hospitals; Having diverse personal experiences during their child’s treatment; and Reporting the socioeconomic and labor impact during their stay in Lima. Final considerations: Understanding these experiences could help health professionals to implement strategies of socioeconomic support to facilitate access to health services for children with cancer. Hospitals must guarantee the satisfaction of the basic needs of parents.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

scholarly journals Late effects of cancer (treatment) and work ability: guidance by managers and professionals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ingrid G. Boelhouwer ◽  
Willemijn Vermeer ◽  
Tinka van Vuuren
Keyword(s):  
Social Support ◽  
Cancer Treatment ◽  
Work Ability ◽  
Late Effects ◽  
Cancer Recurrence ◽  
Organisational Culture ◽  
Job Resources ◽  
Structured Interviews ◽  
Starting Point ◽  
Cognitive Problems

Abstract Background The prevalence of the group of workers that had a cancer diagnosis in the past is growing. These workers may still be confronted with late effects of cancer (treatment) possibly affecting their work ability. As little is known about the guidance of this group, the aim of this study was to explore the experiences and ideas of managers and professionals about the guidance of these workers in the case of late effects of cancer (treatment). Given the positive associations with work ability of the job resources autonomy, social support by colleagues and an open organisational culture found in several quantitative studies, these job resources were also discussed. Further ideas about the influences of other factors and points of attention in the guidance of this group of workers were explored. Methods Semi-structured interviews were conducted with managers (n = 11) and professionals (n = 47). Data-collection was from November 2019 to June 2020. The data were coded and analysed using directed content analyses. Results The late effects of cancer or cancer treatment discussed were physical problems, fatigue, cognitive problems, anxiety for cancer recurrence, and a different view of life. The self-employed have less options for guidance but may struggle with late effects affecting work ability in the same way as the salaried. Late effects may affect work ability and various approaches have been described. Autonomy, social support of colleagues and an open organisational culture were regarded as beneficial. It was indicated that interventions need to be tailor-made and created in dialogue with the worker. Conclusions Especially with respect to cognitive problems and fatigue, guidance sometimes turned out to be complicated. In general, the importance of psychological safety to be open about late effects that affect work ability was emphasized. Moreover, it is important to take the perspective of the worker as the starting point and explore the possibilities together with the worker. Autonomy is an important factor in general, and a factor that must always be monitored when adjustments in work are considered. There is a lot of experience, but there are still gaps in knowledge and opportunities for more knowledge sharing.

scholarly journals POS0160-HPR THE CARE PROCESS OF HIP AND KNEE OSTEOARTHRITIS: GIVING AN ACCOUNT OF PATIENTS’ EXPERIENCE

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 292.2-293
Author(s):  
S. Battista ◽  
M. Manoni ◽  
A. Dell’isola ◽  
M. Englund ◽  
A. Palese ◽  
...  
Keyword(s):  
Knee Osteoarthritis ◽  
Health Professionals ◽  
Emotional Experience ◽  
Functional Limitations ◽  
Care Quality ◽  
Care Process ◽  
Exact Science ◽  
Structured Interviews ◽  
Patients Experience

Background:The care process is often a complex and intimate process experienced by patients. Osteoarthritis (OA) care is usually characterised by multimodal interventions that consider the broader array of symptoms and functional limitations and often require a high level of patients’ compliance. Despite efforts to improve the quality of care of patients suffering from OA, and the publication of state-of-the-art clinical practice guidelines [1], the quality of the care process, as experienced by patients, seems to be suboptimal [2]. Hence, it is essential to investigate how patients experience this process to highlight potential elements that can enhance or spoil it to optimise the care quality.Objectives:To explore the patients’ experience of the received OA care process.Methods:Qualitative study, 10 semi-structured interviews were performed. The interview guide was created by a pool of healthcare professionals (physiotherapists, psychologists, nurses) and expert patients. It investigated the emotional experience, beliefs, expectations, perceived barriers and facilitators towards conservative treatments perceived by patients suffering from OA. The interviews lasted approximately one hour, were transcribed verbatim and analysed independently by two authors, who labelled their core parts to find categories and subcategories. A theme-based analysis was performed following an ecological paradigm, naturalistic epistemology, philosophy of phenomenological research.Results:Our analysis revealed 7 main categories with several subcategories (Fig. 1). 1) Uncertainty as some patients perceived treatment choice not to be based on medical evidence “there is an almost religious way of thinking on how to deal with the pathology. It is not an exact science when you choose the physicians you choose the treatment”. 2) Relationship with the self and the others as some patients did not feel understood or even shameful and hopeless about their condition. 3) Patients’ and Health Professionals’ beliefs about the pathology management where common thoughts were the perceived (ab)use of passive therapies, the movement as something dangerous and that OA is “something that you try to resist to, but (surgery) is your destiny”. 4) facilitators and 5) barriers of the adherence to therapeutic exercise that revolve around the cost of the therapy, the time needed and the willingness to change life habits. 6) Patients’ attitudes towards pathology in which the oldest patients perceive OA as “something I have to accept since I am getting old” and the youngest as “Something I have to fight”. 7) Relationship with food in which diet is seen as something that “you force yourself to follow” which is useful only to lose weight and not to preserve a high health status and where overeating is used “to eat your feelings”.Figure 1.Categories and Subcategories stemmed from the analysis of the patients’ interviewsConclusion:Patients suffering from hip and knee OA seem to experience an uncertain care process. The lack of clear explanations and the attitude towards conservative treatment, which is considered as “a pastime while waiting for surgery,” fosters the importance of providing patients with adequate information about the treatment, to shift their beliefs and improve their awareness. This will enhance a patient-centred and shared decision-making treatments.References:[1]Fernandes L, Hagen KB, Bijlsma JWJ, et al. EULAR recommendations for the non-pharmacological core management of hip and knee osteoarthritis. Ann. Rheum. Dis. 2013;72:1125–35.[2]Basedow M, Esterman A. Assessing appropriateness of osteoarthritis care using quality indicators: a systematic review. J Eval Clin Pract 2015;21:782–9.Acknowledgements:This work is part of the project funded by EULAR Health Professionals Research Grant 2020.Disclosure of Interests:None declared

scholarly journals “My coupons are like gold”: experiences and perceived outcomes of low-income adults participating in the British Columbia Farmers’ Market Nutrition Coupon Program

2021 ◽  
pp. 1-30
Author(s):  
Stéphanie Caron-Roy ◽  
Sayeeda Amber Sayed ◽  
Katrina Milaney ◽  
Bonnie Lashewicz ◽  
Sharlette Dunn ◽  
...  
Keyword(s):  
British Columbia ◽  
Rural Communities ◽  
Low Income ◽  
Well Being ◽  
Qualitative Description ◽  
Farmers Markets ◽  
Social Connections ◽  
Structured Interviews ◽  
Program Outcomes ◽  
Farmers Market

ABSTRACT Objective: The British Columbia Farmers’ Market Nutrition Coupon Program (FMNCP) provides low-income households with coupons valued at $21/week for 16 weeks to purchase healthy foods in farmers’ markets. Our objective was to explore FMNCP participants’ experiences of accessing nutritious foods, and perceived program outcomes. Design: This study used qualitative description methodology. Semi-structured interviews were conducted with FMNCP participants during the 2019 farmers’ market season. Directed content analysis was used to analyse the data whereby the five domains of Freedman et al’s framework of nutritious food access provided the basis for an initial coding scheme. Data that did not fit within the framework’s domains were coded inductively. Setting: One urban and two rural communities in British Columbia, Canada. Participants: 28 adults who were participating in the FMNCP. Results: Three themes emerged: Autonomy and Dignity; Social Connections and Community Building; and Environmental and Programmatic Constraints. Firstly, the program promoted a sense of autonomy and dignity through financial support, increased access to high-quality produce, food-related education and skill development, and mitigating stigma and shame. Secondly, shopping in farmers’ markets increased social connections and fostered a sense of community. Finally, participants experienced limited food variety in rural farmers’ markets, lack of transportation, and challenges with redeeming coupons. Conclusions: Participation in the FMNCP facilitated access to nutritious foods and enhanced participants’ diet quality, well-being and health. Strategies such as increasing the amount and duration of subsidies, and expanding programs may help improve participants’ experiences and outcomes of farmers’ market food subsidy programs.

scholarly journals The INTREST registry: protocol of a multicenter prospective cohort study of predictors of women’s response to integrative breast cancer treatment

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Heidemarie Haller ◽  
Petra Voiß ◽  
Holger Cramer ◽  
Anna Paul ◽  
Mattea Reinisch ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Cohort Study ◽  
Cancer Treatment ◽  
Prospective Cohort Study ◽  
Cancer Care ◽  
Prospective Cohort ◽  
Breast Cancer Treatment ◽  
Cancer Data ◽  
Patient Reported

Abstract Background Cancer registries usually assess data of conventional treatments and/or patient survival. Beyond that, little is known about the influence of other predictors of treatment response related to the use of complementary therapies (CM) and lifestyle factors affecting patients’ quality and quantity of life. Methods INTREST is a prospective cohort study collecting register data at multiple German certified cancer centers, which provide individualized, integrative, in- and outpatient breast cancer care. Patient-reported outcomes and clinical cancer data of anticipated N = 715 women with pTNM stage I-III breast cancer are collected using standardized case report forms at the time of diagnosis, after completing neo−/adjuvant chemotherapy, after completing adjuvant therapy (with the exception of endocrine therapy) as well as 1, 2, 5, and 10 years after baseline. Endpoints for multivariable prediction models are quality of life, fatigue, treatment adherence, and progression-based outcomes/survival. Predictors include the study center, sociodemographic characteristics, histologic cancer and comorbidity data, performance status, stress perception, depression, anxiety, sleep quality, spirituality, social support, physical activity, diet behavior, type of conventional treatments, use of and belief in CM treatments, and participation in a clinical trial. Safety is recorded following the Common Terminology Criteria for Adverse Events. Discussion This trial is currently recruiting participants. Future analyses will allow to identify predictors of short- and long-term response to integrative breast cancer treatment in women, which, in turn, may improve cancer care as well as quality and quantity of life with cancer. Trial registration German Clinical Trial Register DRKS00014852. Retrospectively registered at July 4th, 2018.

scholarly journals An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

2021 ◽  
pp. 104990912098612
Author(s):  
Alycia A. Bristol ◽  
Sobaata Chaudhry ◽  
Dana Assis ◽  
Rebecca Wright ◽  
Derek Moriyama ◽  
...  
Keyword(s):  
Palliative Care ◽  
Kidney Disease ◽  
Chronic Kidney Disease Stage ◽  
Stage Iv ◽  
The United States ◽  
Qualitative Description ◽  
Disease Stage ◽  
Structured Interviews ◽  
Care Clinic ◽  
Clinical Model

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

scholarly journals Needs of LMIC-based tobacco control advocates to counter tobacco industry policy interference: insights from semi-structured interviews

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e044710
Author(s):  
Britta Katharina Matthes ◽  
Lindsay Robertson ◽  
Anna B Gilmore
Keyword(s):  
Tobacco Control ◽  
Structural Changes ◽  
Tobacco Industry ◽  
Control Policy ◽  
Qualitative Description ◽  
Structured Interviews ◽  
Middle Income ◽  
Adoption And Implementation ◽  
National Coalition ◽  
Industry Policy

IntroductionAdvocacy is vital for advancing tobacco control and there has been considerable investment in this area. While much is known about tobacco industry interference (TII), there is little research on advocates’ efforts in countering TII and what they need to succeed. We sought to examine this and focused on low- and middle-income countries (LMICs) where adoption and implementation of the Framework Convention on Tobacco Control (FCTC) tend to remain slower and weaker.MethodWe interviewed 22 advocates from eight LMICs with recent progress in a tobacco control policy. We explored participants’ experiences in countering TII, including the activities they undertake, challenges they encounter and how their efforts could be enhanced. We used Qualitative Description to analyse transcripts and validated findings through participant feedback.ResultsWe identified four main areas of countering activities: (1) generating and compiling data and evidence, (2) accessing policymakers and restricting industry access, (3) working with media and (4) engaging in a national coalition. Each area was linked to challenges, including (1) lack of data, (2) no/weak implementation of FCTC Article 5.3, (3) industry ties with media professionals and (4) advocates’ limited capacity. To address these challenges, participants suggested initiatives, including access to country-specific data, building advocates’ skills in compiling and using such data in research and monitoring, and in coalition development; others aiming at training journalists to question and investigate TII; and finally, diverse interventions intended to advance a whole-of-government approach to tobacco control. Structural changes to tobacco control funding and coordination were suggested to facilitate the proposed measures.ConclusionThis research highlights that following years of investment in tobacco control in LMICs, there is growing confidence in addressing TII. We identify straightforward initiatives that could strengthen such efforts. This research also underscores that more structural changes to enhance tobacco control capacity building should be considered.

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