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"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:BackgroundMedical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important.MethodsA longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median?=?380, mean?=?324, SD?=?174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n?=?16), fathers (n?=?12), and HCPs (n?=?108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making.ResultsParents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors.ConclusionsParents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.

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.

Similar Datasets

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