scholarly journals Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study

2020 ◽  
Author(s):  
Laura Ashley ◽  
Rachael Kelley ◽  
Alys Griffiths ◽  
Fiona Cowdell ◽  
Ann Henry ◽  
...  
Keyword(s):  
Cancer Care ◽  
Treatment Decision ◽  
Hospital Staff ◽  
Ethnographic Study ◽  
Cancer Information ◽  
Structured Interviews ◽  
Global Challenge ◽  
Treatment Decision Making ◽  
People With Dementia ◽  
Care And Treatment

Abstract Background Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted. Results There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. Conclusions Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

scholarly journals Mealtime Care for People With Dementia: What Do Nursing Home Staff Think?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 182-183
Author(s):  
James Faraday ◽  
Clare Abley ◽  
Catherine Exley ◽  
Joanne Patterson
Keyword(s):  
Nursing Homes ◽  
Ethnographic Study ◽  
Direct Care ◽  
Care Staff ◽  
Direct Care Staff ◽  
Structured Interviews ◽  
Staff Members ◽  
People With Dementia ◽  
Comparison Approach ◽  
The Right

Abstract More and more people with dementia are living in nursing homes (NH). Often, they depend on NH staff for help with eating and drinking. It is important that staff have the skills and support they need to provide good care at mealtimes. This qualitative study explores mealtime care for people with dementia, from the perspective of NH staff. Semi-structured interviews with NH staff (n=16) were carried out in two nursing homes. The homes were chosen to have diverse characteristics: one home had a large number of beds and was part of a small local organization; the other had a small number of beds and was part of a large national organization. Various staff members were interviewed, including direct care staff, senior carers, nurses, managers, and kitchen staff. Interviews were audio-recorded and transcribed verbatim. A constant comparison approach was taken, so that data from early interviews were explored in more depth subsequently. From the analysis, five themes emerged as important in mealtime care for people with dementia living in nursing homes: Setting the right tone; Working well as a team; Knowing the residents; Promoting autonomy and independence; Gently persevering. This work forms part of a larger ethnographic study on the topic, which includes data from residents with dementia, and family carers. Results will inform the development of a staff training intervention to optimize mealtime care for this population.

Information behaviour and decision-making in patients during their cancer journey

2017 ◽  
Vol 35 (3) ◽  
pp. 494-506 ◽  
Author(s):  
Shih-Chuan Chen
Keyword(s):  
Decision Making ◽  
Cancer Patients ◽  
Information Source ◽  
Alternative Therapy ◽  
Treatment Decision ◽  
Treatment Method ◽  
Structured Interviews ◽  
Content Type ◽  
Information Behaviour ◽  
Treatment Decision Making

Purpose This paper aims to investigate the effect of cancer patients’ information behaviour on their decision-making at the diagnosis and treatment stages of their cancer journey. Patients’ information sources and their decision-making approaches were analyzed. Design/methodology/approach Semi-structured interviews were conducted with 15 participants. Findings The cancer patients sought information from various sources in choosing a hospital, physician, treatment method, diet and alternative therapy. Physicians were the primary information source. The patients’ approaches to treatment decision-making were diverse. An informed approach was adopted by nine patients, a paternalistic approach by four and a shared decision-making approach by only two. Practical implications In practice, the findings may assist hospitals and medical professionals in fostering pertinent interactions with patients. Originality/value The findings can enhance researcher understanding regarding the effect of cancer patients’ information behaviour on their decision-making.

scholarly journals Patient and proxy reports regarding the experience of treatment decision‐making in cancer care

2020 ◽  
Vol 29 (11) ◽  
pp. 1943-1950
Author(s):  
Jessica K. Roydhouse ◽  
Roee Gutman ◽  
Ira B. Wilson ◽  
Kenneth L. Kehl ◽  
Nancy L. Keating
Keyword(s):  
Decision Making ◽  
Cancer Care ◽  
Treatment Decision ◽  
Treatment Decision Making ◽  
Proxy Reports

Treatment decision-making in cancer care: the role of the carer

2010 ◽  
Vol 19 (13-14) ◽  
pp. 2023-2031 ◽  
Author(s):  
Gill Hubbard ◽  
Nicola Illingworth ◽  
Neneh Rowa-Dewar ◽  
Liz Forbat ◽  
Nora Kearney
Keyword(s):  
Decision Making ◽  
Cancer Care ◽  
Treatment Decision ◽  
Treatment Decision Making

Abstract A047: An ethnographic study of African American men's prostate cancer treatment decision-making

2020 ◽  
Author(s):  
Nynikka R. Palmer ◽  
Richard L. Street ◽  
Dean Schillinger ◽  
Janet K. Shim ◽  
Sarah D. Blaschko ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
African American ◽  
Cancer Treatment ◽  
Treatment Decision ◽  
Ethnographic Study ◽  
Prostate Cancer Treatment ◽  
Treatment Decision Making

Out to Pasture: A Case for the Retirement of Canadian Mental Health Legislation

1993 ◽  
Vol 12 (1) ◽  
pp. 37-55 ◽  
Author(s):  
Robert M. Gordon
Keyword(s):  
Mental Health ◽  
Health Care ◽  
Treatment Strategies ◽  
Treatment Decision ◽  
Legal Framework ◽  
Consumer Involvement ◽  
Treatment Decision Making ◽  
Mental Health Legislation ◽  
Care And Treatment ◽  
Health Legislation

The emergence of new adult guardianship and related legislation and systems in British Columbia, Ontario, and other jurisdictions has generated questions about the utility of separate mental health legislation. Mental health statutes are the descendents of legislation that once created and regulated separate institutions and systems for the insane (later known as the mentally diseased and, more recently, the mentally ill). Such legislation is no longer consistent with the dominant community care and treatment strategies in the mental health field and the growing trend to recognize and respect consumer involvement in care and treatment decision making. Emerging legislation in the guardianship field makes provision for a range of options and mechanisms that can replace separate mental health statutes (e.g., general consent to health care legislation, and provision for enduring powers of attorney of the person and Ulysses agreements) and produce a new and more effective legal framework for the provision of mental health care and treatment.

HSR19-089: Misperceptions Regarding Palliative and Hospice Care Among Cancer Patients: What Can We Learn from Patient-Reported Treatment Decision Making

2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-089
Author(s):  
Sara Hayes ◽  
Brian M. Green ◽  
Shayna Yeates ◽  
Amrita Bhowmick ◽  
Kaitlyn McNamara ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Palliative Care ◽  
Cancer Care ◽  
Hospice Care ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Treatment Decision Making ◽  
Diagnosis Of Cancer

Background: Despite NCCN Guidelines and clear definition of palliative care, patients often carry misperceptions about palliative care and how it can be beneficially integrated into a patient’s care plan. In order to better understand the misinformation about palliative and hospice care, this study aims to assess patient-healthcare provider (HCP) communication regarding treatment decisions. Methods: An online survey was conducted with individuals who have had a diagnosis of cancer (n=1,517) to better understand their healthcare experiences as well as the impact their cancer diagnosis had on their quality of life. Measures included agreement scale questions assessing patient information needs surrounding treatment decision making. Open-ended questions where respondents were prompted to provide a written response allowed researchers to further assess patients’ understanding of palliative and hospice care. Responses to agreement-scale questions were evaluated using descriptive statistics. Openended question responses were analyzed using Dedoose qualitative data analysis software. Results: Among patients with a diagnosis of cancer, there were a broad range of patient misperceptions regarding palliative care, hospice care, and how they are used in cancer care. The majority of respondents (81%) stated that their HCP played a role when deciding on their treatment plan. Despite this, only 46% were confident they knew about the treatment’s impact on their daily life, 56% were confident they knew about the potential side effects of treatment, and 57% felt they had all of the information they needed. Themes identified through qualitative analysis include: patient conflation of palliative and hospice care, belief that palliative and hospice care are only relevant to end-of-life decision-making, and uncertainty about whether quality of life can actually be improved. Conclusions: Institutions and HCPs are recommended to integrate palliative care into cancer care. However, as this research shows, oncology patients are often misinformed about the benefits of palliative care. This follows a parallel concern of patients making treatment decisions without optimal information. A potential factor behind this unmet need may be lack of effective communication between patient and HCP. Palliative care may be mentioned by the HCP, but not discussed with enough empathy or depth, leading to patient misunderstanding and lack of inclusion in treatment plans.

scholarly journals The cultural and structural influences that ‘hide’ information from women diagnosed with breast cancer in Ghana: an ethnography

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Linda Serwaa Agyemang ◽  
Claire Foster ◽  
Chris McLean ◽  
Deborah Fenlon ◽  
Richard Wagland
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Cultural Influences ◽  
Language Barriers ◽  
Treatment Decision ◽  
Cultural Factors ◽  
Structured Interviews ◽  
Financial Barriers ◽  
Essential Information ◽  
Treatment Decision Making

Abstract Background Socio-cultural factors may influence the uptake of breast cancer treatments. This study aimed to explore these socio-cultural influences on treatment decision-making for women in Ghana. Method An ethnographic approach was adopted. Observation was conducted of women newly diagnosed with breast cancer, nominated relatives, nurses and doctors at a breast clinic in Ghana. Semi-structured interviews followed participant observation. Thematic analysis was employed. Findings Over 16 weeks (July 2017–November 2017), 31 participants were observed and 29 took part in semi-structured interviews. Three overarching themes were identified: (1) unequal power relationships; (2) Language barriers and (3) structural constraints. Following a breast cancer diagnosis, essential information necessary for treatment decision making is ‘hidden’ from women due to an unequal patient-provider relationship. Patients acknowledged cultural behaviours of deference to experts. Doctors deliberately misrepresented treatment information to women to encourage them to undergo surgical treatment. Structural issues such as the lack of privacy during consultations hindered quality patient engagement with decision-making. High treatment costs and the lack of resources to assist women with fertility after treatment impeded open discussions around these issues. Language barriers included a lack of terms in the local Twi language to explain cancer and its treatment. There was also an absence of appropriate information materials. Conclusion Findings highlight the need for health professionals to be aware of the socio-cultural factors that limit access to quality information which is needed for informed treatment decision making. Policies that aim to provide adequate logistics; increase staffing levels; improve staff cultural awareness training and remove financial barriers are recommended.

scholarly journals Self-referral of Chinese patients with advanced chronic kidney disease and treatment decision-making: A qualitative study

2020 ◽  
Author(s):  
Yajing Gao ◽  
Yan Shan ◽  
Tingting Jiang ◽  
Xue Li ◽  
Xinxin Jiang ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Kidney Disease ◽  
Negative Emotion ◽  
Treatment Decision ◽  
Chinese Patients ◽  
Structured Interviews ◽  
Advanced Chronic Kidney Disease ◽  
Treatment Decision Making ◽  
Referral Decision

Abstract: Rationale, aims, and objectives: Chinese patients with advanced chronic kidney disease (CKD), especially rural patients possibly occur self-referral behavior and then treatment decisions followed. It is unclear the relationship between self-referral and treatment decision-making. Thus, the aim of this study was to explore the perceptions and views of self-referral and treatment decision making among patients with advanced chronic kidney disease. Methods: We conducted semi-structured interviews with 26 patients with advanced kidney disease and 12 nephrologists. Interviews were conducted and analyzed thematically until reaching thematic saturation. Results: We identified three themes reflected: 1) self-referral decision making (self-referral motive, barrier to self-referral, seeking for self-referral information); 2) the views and experience of self-referral care (facilitating shared decision making, imposing psychological pressure, feeling about self-referral communication, challenge to staff-patient relationship); 3) treatment decision making (decisional awareness and roles, cost-benefit trade-off and redicision). Conclusions: Our study identified that organizational and demographic factors, self-referral motives worked together at the self-referral decision-making and treatment decision-making when advanced CKD patients facing with healthcare facilities and treatment options. Those findings suggest stakeholders should accelerate the popularization of peritoneal dialysis technology and establish the CKD screening and management systems. For self-referral patients with advanced CKD, our results suggest specialized dialysis transition care to improve quality of communication and soothe patients’ negative emotion.

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