scholarly journals Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

2018 ◽  
Vol 40 (5) ◽  
pp. 944-965 ◽  
Author(s):  
Lorna McWilliams ◽  
Caroline Swarbrick ◽  
Janelle Yorke ◽  
Lorraine Burgess ◽  
Carole Farrell ◽  
...  
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Treatment Options ◽  
Treatment Decision ◽  
Vital Role ◽  
Family Carers ◽  
Structured Interviews ◽  
Cancer Symptoms ◽  
People With Dementia ◽  
Diagnosis Of Cancer

AbstractThe risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

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 “Along for the Ride”: A Qualitative Study Exploring Patient and Caregiver Perceptions of Decision Making in Cancer Care

2020 ◽  
Vol 5 (1) ◽  
pp. 238146832093357
Author(s):  
Laura M. Holdsworth ◽  
Dani Zionts ◽  
Steven M. Asch ◽  
Marcy Winget
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Cancer Care ◽  
Treatment Options ◽  
Treatment Decision ◽  
Informed Choice ◽  
Disease Assessment ◽  
Cancer Center ◽  
Additional Information ◽  
Assessment And Treatment

Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center’s effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a “passenger” in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.

A qualitative exploration of family carer’s understandings of people with dementia’s expectations for the future

Dementia ◽  
2020 ◽  
pp. 147130122092954
Author(s):  
Sheridan T Read ◽  
Christine Toye ◽  
Dianne Wynaden
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Family Carers ◽  
Structured Interviews ◽  
Grounded Theory Method ◽  
People With Dementia ◽  
Care Partners ◽  
The Future ◽  
Constant Comparative Analysis

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

Results from a focus group evaluating TrialTALK, a designed conversation to facilitate cancer treatment shared decision making.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 34-34
Author(s):  
Toby Christopher Campbell ◽  
Erin Kennedy ◽  
Selina Schmocker
Keyword(s):  
Clinical Trial ◽  
Decision Making ◽  
Focus Group ◽  
Cancer Treatment ◽  
Shared Decision Making ◽  
Information Needs ◽  
Treatment Options ◽  
Treatment Decision ◽  
Shared Decision ◽  
Treatment Decision Making

34 Background: Cancer treatment decision making involves timely, high-risk, shared decision-making conversations between patients, their families, and their oncologists. These conversations are a prime target for a carefully designed, easy to interpret approach to facilitate preference-sensitive decision-making. The TrialTALK approach has two core elements: a verbal approach and a pen & paper diagram. The diagram includes the diagnosis with prognostic implications, available treatment options along with estimates for efficacy and anticipated impact on daily life. The verbal conversation corresponds to the diagram and includes a phrase to encourage deliberation and empathic responses. Here, we report the results of a focus group conducted in Toronto comparing two approaches to a cancer decision making conversation. Methods: Our focus group was comprised of 9 patients, all with incurable malignancy. They observed a live reading of an actual transcript of a cancer treatment decision making conversation between a patient and oncologist who presented three options: observation, chemotherapy, and a clinical trial. The investigators re-organized the conversation, reusing as many words as possible, into the TrialTALK framework. No new information was introduced. After watching each scene, participants discussed and rated the conversation for information needs and indicated the decision. Results: Three (33%) said rated the standard conversation as meeting their informational needs while 7/9 (78%) reported needs were met by the designed approach. Decision making preferences following the conversations are shown in the table. Patients reported feeling the physician in the designed conversation was more prepared; they felt greater trust and confidence; they valued the paper diagram; they felt more empowered and engaged in the decision. Conclusions: A designed conversation may improve patient understanding, influence decision making, while also enhancing the patient-physician relationship. Clinical trial information: NCT03656276. [Table: see text]

scholarly journals How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer?

2019 ◽  
Vol 28 (6) ◽  
pp. 1197-1206 ◽  
Author(s):  
Charlene Martin ◽  
Anne Shrestha ◽  
Maria Burton ◽  
Karen Collins ◽  
Lynda Wyld
Keyword(s):  
Decision Making ◽  
Older People ◽  
Treatment Decision ◽  
Treatment Decision Making ◽  
People With Dementia ◽  
Diagnosis Of Cancer ◽  
New Diagnosis

A comparison of patient and physician attributes that promote patient involvement in treatment decision making in the oncology consultation

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6098-6098
Author(s):  
P. M. Ellis ◽  
S. J. Dimitry ◽  
M. A. O’Brien ◽  
C. A. Charles ◽  
T. J. Whelan
Keyword(s):  
Decision Making ◽  
Information Seeking ◽  
Patient Involvement ◽  
Treatment Options ◽  
Treatment Decision ◽  
Skills Training ◽  
Structured Interviews ◽  
Treatment Decision Making ◽  
High Level ◽  
Level Of Agreement

6098 Background: Cancer patients have indicted a desire to be more involved in treatment decision making (TDM). However, little is known about the attributes of patients, physicians and their interaction that promotes patient involvement in TDM in the oncology consultation. This study compared attributes generated by patients and physicians that make it easier for patients to be involved in TDM. Methods: Semi-structured interviews were undertaken with 19 patients with cancer (lung, breast, prostate, GI) and 21 medical and radiation oncologists at a regional cancer centre. Participants were asked to identify attributes of physicians, patients and their interaction that promotes patient involvement in TDM. Interview transcripts were independently coded by 2 analysts using decision rules to identify specific attributes. Attributes identified by each analyst were compared and a high level of agreement was found. The analysts then independently compared the physician and patient generated lists and identified common vs unique items. There was a high level of agreement on which attributes were common to both lists versus unique. Results: Oncologists identified 173 physician, 59 patient and 9 interaction items. Patients identified 50 physician, 42 patient and 11 interaction items. Patients and physicians identified 17 common physician items, 29 common patients items and 1 common interaction item. Physicians identified 138 more attributes than patients, most of which were physician related. Common patient attributes centred on information seeking (eg prepare for the consultation by reading, be aware of all treatment options and question the options). Common physician attributes focused on specific communication behaviors (eg, make eye contact, tailor information to patient needs, be direct with patients, ensure patient understands information). The common interaction item was to keep the discussion informal. Conclusions: Patients and physicians appear to have different ideas about what is important to promote patient involvement in TDM. Many of the attributes identified can be easily incorporated into current practice. There is a need to develop and evaluate communication skills training to promote patient involvement in TDM. No significant financial relationships to disclose.

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.

The Significance of Patient-Reported Outcomes for Metastatic Breast Cancer Patients

2022 ◽  
Author(s):  
Larissa Elisabeth Hillebrand ◽  
Ulrike Söling ◽  
Norbert Marschner
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Metastatic Breast Cancer ◽  
Cancer Treatment ◽  
Patient Reported Outcomes ◽  
Metastatic Breast ◽  
Treatment Decision ◽  
Breast Cancer Patients ◽  
Treatment Decision Making ◽  
Patient Reported

Background: Breast cancer is still the most common malignancy in women worldwide. Once metastasized, breast cancer treatment primarily aims at reducing symptom burden, thereby trying to maintain and improve a patient´s quality of life (QoL), delaying disease progression, and prolonging survival. Curing the disease is not possible in the palliative setting. To better understand metastatic breast cancer patients, their symptoms and wishes, which are important for treatment-decision making and outcome, patient-reported outcomes (PROs) are of great importance, giving an impression of what really matters to and concerns a patient. Summary: Many advances have been made to implicate PROs in clinical trials, non-interventional studies, registries, and clinical routine care of metastatic breast cancer. For example, large phase III trials like PALOMA-3 (NCT01942135), MONALEESA-7 (NCT02278120), HER2CLIMB (NCT02614794), and KEYNOTE-119 (NCT02555657) trials implemented PROs in their trial design to assess the QoL of their trial patients. Also, non-interventional studies on metastatic breast cancer, like e.g., the NABUCCO study (IOM-02240), and prospective non-interventional, multicenter registries e.g., the tumor registry breast cancer (NCT01351584) or the breast cancer registry platform OPAL (NCT03417115), have implemented PROs to assess QoL during the anti-cancer treatment periods of the patients. Key Message: Using PROs in metastatic breast cancer can support shared treatment-decision making and management of symptoms, eventually leading to an improvement in QoL. Progressively, regulatory authorities take PROs into consideration for the approval of new drugs. Hence, the implication of PROs in cancer treatment, and especially in MBC, is of significant value.

scholarly journals Perceived importance of affective forecasting in cancer treatment decision making

2020 ◽  
Vol 38 (6) ◽  
pp. 687-701
Author(s):  
Laura M. Perry ◽  
Michael Hoerger ◽  
Brittany D. Korotkin ◽  
Paul R. Duberstein
Keyword(s):  
Decision Making ◽  
Cancer Treatment ◽  
Treatment Decision ◽  
Affective Forecasting ◽  
Treatment Decision Making ◽  
Perceived Importance
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