Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Holdsworth LM

PROVIDER: S-EPMC7294494 | biostudies-literature | 2020 Jan-Jun

REPOSITORIES: biostudies-literature

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

Holdsworth Laura M LM Zionts Dani D Asch Steven M SM Winget Marcy M

MDM policy & practice 20200101 1

<b>Background.</b> 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. <b>Objective.</b> To explore patient and caregiver perceptions of the choices and decisi ...[more]

PMID: 32587894

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Project description:BackgroundSince the onset of the COVID-19 pandemic, virtual care solutions have been rapidly adopted across the country to provide safe, quality care to diverse patient populations. The objective of this qualitative case study was to understand patient and caregiver experiences of virtual care to identify barriers and gather suggestions to address them.MethodsIn this patient-oriented project, we sought to understand gaps in virtual care experienced by patients and caregivers, using virtual focus groups. With the assistance of a patient research liaison, we engaged 2 patient partners as full partners; they participated in study conception, data collection, data analysis and knowledge translation. Recruitment was done through email by disseminating the study poster to 30 community organizations and health units in Ontario and British Columbia. We conducted a constructivist, qualitative study guided by grounded theory methodology. One researcher employed in-vivo coding, followed by axial coding with focus group participants, followed by selective coding with the study team. The study took place from November to December 2020.ResultsWe conducted 6 focus groups with 13 patients and 5 caregivers. The analysis resulted in 6 major themes and 17 minor themes. Key findings showed that barriers related to access to technology and Internet, language and cultural differences were challenges to virtual care. Participants identified special considerations surrounding caregiver and family involvement; privacy, consent and confidentiality; and the patient-physician relationship. Participants suggested that technology and the Internet be universally accessible and that virtual care modalities be integrated (e.g., consolidated patient portal) to improve virtual care.InterpretationThere are multiple patient-identified barriers to accessing virtual care in Canada; patients can provide insights into ways to address these barriers. Future research should include robust patient engagement to explore ways to address these challenges and barriers to ensure that virtual care can be equitable, accessible and safe for all users.Plain language summaryAlthough virtual care has been rapidly adopted and scaled up in health care institutions across the country, few improvements informed by patient and caregiver experiences have been made. Driven by concerns expressed by patient partners, our study team undertook a patient-partnered qualitative study to understand the barriers of virtual care from the perspectives and experiences of patients and caregivers. Our study team created the interview guide drawing from our previous patient-oriented qualitative studies and designed an orientation package to provide resources related to the focus groups and to introduce participants to the study team. Drawing from local health teams, clinics and patient advisory groups, the study team recruited 13 patients and 5 caregivers to participate in 6 focus group interviews. An analysis based on grounded theory was undertaken, with participation from both the study team and participants. Lack of access to technology or Internet and language barriers were determined to be the primary challenges in virtual care. Special considerations to caregiver and family involvement, privacy and confidentiality, as well as the patient-physician relationship were considered priorities to improving access to virtual care. Participants offered recommendations and potential solutions to address barriers and challenges in virtual care, which can serve to encourage large-scale policy and programmatic changes in patient-centred ways.

Project description:BackgroundDigital health-tracking tools are changing mental health care by giving patients the ability to collect passively measured patient-generated health data (PGHD; ie, data collected from connected devices with little to no patient effort). Although there are existing clinical guidelines for how mental health clinicians should use more traditional, active forms of PGHD for clinical decision-making, there is less clarity on how passive PGHD can be used.ObjectiveWe conducted a qualitative study to understand mental health clinicians' perceptions and concerns regarding the use of technology-enabled, passively collected PGHD for clinical decision-making. Our interviews sought to understand participants' current experiences with and visions for using passive PGHD.MethodsMental health clinicians providing outpatient services were recruited to participate in semistructured interviews. Interview recordings were deidentified, transcribed, and qualitatively coded to identify overarching themes.ResultsOverall, 12 mental health clinicians (n=11, 92% psychiatrists and n=1, 8% clinical psychologist) were interviewed. We identified 4 overarching themes. First, passive PGHD are patient driven-we found that current passive PGHD use was patient driven, not clinician driven; participating clinicians only considered passive PGHD for clinical decision-making when patients brought passive data to clinical encounters. The second theme was active versus passive data as subjective versus objective data-participants viewed the contrast between active and passive PGHD as a contrast between interpretive data on patients' mental health and objective information on behavior. Participants believed that prioritizing passive over self-reported, active PGHD would reduce opportunities for patients to reflect upon their mental health, reducing treatment engagement and raising questions about how passive data can best complement active data for clinical decision-making. Third, passive PGHD must be delivered at appropriate times for action-participants were concerned with the real-time nature of passive PGHD; they believed that it would be infeasible to use passive PGHD for real-time patient monitoring outside clinical encounters and more feasible to use passive PGHD during clinical encounters when clinicians can make treatment decisions. The fourth theme was protecting patient privacy-participating clinicians wanted to protect patient privacy within passive PGHD-sharing programs and discussed opportunities to refine data sharing consent to improve transparency surrounding passive PGHD collection and use.ConclusionsAlthough passive PGHD has the potential to enable more contextualized measurement, this study highlights the need for building and disseminating an evidence base describing how and when passive measures should be used for clinical decision-making. This evidence base should clarify how to use passive data alongside more traditional forms of active PGHD, when clinicians should view passive PGHD to make treatment decisions, and how to protect patient privacy within passive data-sharing programs. Clear evidence would more effectively support the uptake and effective use of these novel tools for both patients and their clinicians.

Dataset Information

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

Publications

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

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