Background Breast cancer prevalence is increasing in most countries. Not only the threat of death and impact of breast cancer treatment, but also the participation roles during treatment decision making can be substantial, leading to psychological distress and poor quality of life. Previous studies have explored patients’ participation preference, the extent of participation congruence and related factors, revealing that women suffering from breast cancer may benefit from participation in treatment decision making whilst participation incongruity could be potentially detrimental for women with breast cancer. Objectives This study aimed to systematically review the literature and summarize the extent of breast cancer patients’ participation preference, participation congruence, and related factors. Methods Multiple searches for key words were conducted through electronic sources, including PubMed, PsycINFO, and Medline via Ovid databases for all relevant English language literature. Studies were selected basing on specific inclusion/exclusion criteria. The STROBE checklist was applied for reporting quality assessment. Results A total of 778 studies were identified. Twelve eligible studies were included in this review. Twelve factors relating to breast cancer women’s participation congruence in treatment decision making were identified as follows: age, nature of preferred role of treatment decision making, educational level, time related issues, language/ethnicity, marital status, information and recommendations of treatment, offering treatment options, physician characteristics, type of therapy or cancer program, stage of breast cancer, and surgeon volume. Conclusions Three themes (i.e. patient oriented, physician-patient interaction, and medical provision) of intervention points towards patient participation congruence were synthesized and discussed, and they were useful for improving the quality of existing breast cancer treatment decision making by addressing patient’s perceived participation congruence. / published_or_final_version / Public Health / Master / Master of Public Health

Purpose: A systematic review and meta-analysis was conducted to identify what factors have been investigated as correlates of the 4 key domains of treatment decision making capacity (TDMC) in people who have experienced psychosis (understanding, reasoning, appreciation, communication) and to provide estimates of the magnitude of these correlations, taking into account study quality. A novel empirical study was conducted to test the hypothesis that variance in psychosis-specific cognitive biases (including the well-established ‘jumping to conclusions’ bias) would account for unique variance in TDMC domains in those with psychosis, after taking into account the known contribution of symptoms and insight. A secondary aim of the empirical study was to examine for the first time the relationship between TDMC and personal recovery in this group, and post hoc analyses of the relationship between cognitive biases, emotional distress and TDMC were also conducted. Methods: Electronic databases were systematically searched for literature on the schizophrenia and psychosis and treatment decision making capacity. Pooled estimates of correlation were estimated for factors with data from three or more studies, and both study and outcome quality were systematically assessed. A cross-sectional observational study was conducted, and individuals with psychosis completed measures of TDMC, cognitive biases, psychotic symptoms and recovery. Multiple regression was used to examine the primary and secondary hypotheses, and mediation analyses were used to conduct the post hoc analyses. Additional data from a parallel study was incorporated to increase power. Results: Twenty-four studies met inclusion criteria for the systematic review and meta-analysis. Low to moderate quality evidence suggested that the ability of people with psychosis to understand treatment-relevant information was strongly associated with overall psychotic symptom severity, verbal cognitive functioning and years of education, but not depression (moderate quality evidence). Low quality evidence suggested reasoning was strongly associated with verbal cognitive functioning and moderately associated with symptoms. Appreciation was associated with symptoms, but it and communication were generally poorly studied. Findings from the empirical study suggest that cognitive biases, and the Jumping to Conclusions bias in particular, predicts a moderate amount of the variance in the understanding and reasoning TDMC domains, but did not add predictive power to a model containing symptoms, insight, and cognition. The appreciation domain was strongly predicted by cognitive biases, insight, and cognition. TDMC was not found to be correlated with personal recovery and post hoc analyses did not find that emotional distress mediated any relationship between cognitive biases and TDMC. Conclusions: The meta-analysis confirms there is a robust association between symptoms and TDMC in psychosis, as currently conceived. The empirical study suggests cognitive biases may be related to TDMC, even after taking into account the contribution of symptoms. Larger studies, perhaps employing experimental procedures, are required to clarify the exact nature of this relationship. The lack of any relationship between TDMC and service-user defined recovery from psychosis is notable, and lends support to those calling for a conceptualisation of TDMC that takes greater account of this concept.

Efforts by policymakers to involve patients in treatment decision making are increasing worldwide. Some of these efforts must accommodate patients with different levels of health literacy, but do not specify if numeracy is part of health literacy. This research asked, How are health literacy and numeracy defined in the academic literature and what empirical relationship(s) do they have with the three stages of the treatment decision making process? I conducted a systematic review and two scoping reviews. In the systematic review, I identify definitions of health literacy used in the academic literature and interpretations possible for the most commonly used definitions. In the first scoping review, I map the empirical relationships between health literacy and the three stages of treatment decision making (information exchange, deliberation, and deciding on the treatment to implement). In the second scoping review, I map the empirical relationships between numeracy and the three stages of treatment decision making, and examine if, and how, numeracy has been mentioned in relation to health literacy. The systematic review identified 250 different definitions of health literacy and found the most commonly used definitions open to differing interpretations. The scoping reviews revealed a lack of: (1) agreement over the definition, measurement, and handling of health literacy and numeracy in studies, and (2) overlap in the relationship(s) examined. Health literacy and numeracy were largely treated as separate concepts. Knowledge gaps and measurement-related problems were identified. The findings from the systematic review pose significant challenges for the measurement of health literacy and for the implementation of health literacy-related policy initiatives. The meaning(s) of health literacy must be explicated by both researchers and policymakers. The findings from the scoping reviews indicate that the relationship(s) between health literacy, numeracy, and treatment decision making is unclear. Researchers must address the knowledge gaps and measurement-related problems identified. / Dissertation / Doctor of Philosophy (PhD) / Health literacy – the ability to obtain, understand, evaluate, and communicate information - is gaining increasing attention from both researchers and policymakers. This attention is important to efforts seeking to involve patients in their treatment decisions. Some of these efforts require attention to patients’ health literacy, but do not make clear if numeracy (or math skills) is part of health literacy. This research examines how health literacy and numeracy are defined. The relationship(s) that health literacy and numeracy have with the three stages of the treatment decision making process are also examined. The findings show that health literacy and numeracy have been: (1) defined and measured differently in studies, and (2) largely treated as separate concepts by researchers. The relationships between health literacy, numeracy, and the three stages of treatment decision making are also unclear because of knowledge gaps and measurement-related problems.

Treatment decision making (TDM) in oncology is complex. Understanding treatment information is essential for shared TDM. Research suggests many patients have low numeracy. This mixed methods study explored numeracy and experience with numbers in a sample of individuals diagnosed with follicular lymphoma. Participants completed questionnaires (N = 32) and interviews (N = 20) assessing numeracy, decisional conflict and regret, and number preference. Results suggest that mean objective numeracy was relatively high, and most reported high confidence in numerical ability. Most participants preferred to receive numbers during the TDM process. There was no relationship between numeracy and decision outcomes. Future research should investigate the use of numeracy measures in practice and the impact of patient preferences and beliefs on shared TDM.

In the treatment of early stage breast cancer, both mastectomy and lumpectomy followed by radiation therapy have been recognized as having similar survival rates. Increasingly, women are being given the opportunity to choose which of these surgical treatment options they wish to pursue. Decisions tend to be made rather quickly, and some women may later regret their treatment choice. In this study, an instrument (Breast Cancer Treatment Inventory (BCTI)) was developed that identified five primary sources of influence that affect women's breast cancer treatment decisions: cosmetic outcome, preparedness, physician's choice, short-term effects, and long-term effects. Items were generated and refined by oncology professionals and breast cancer survivors, followed by a pilot study conducted with members of a breast cancer support group. The resulting 28-item scale was completed by 139 early stage breast cancer patients. A series of oblique factor analyses yielded a five-factor solution with reliabilities ranging from .66 - .87. Content validity was enhanced by involving oncology experts and women with breast cancer in the item generation procedures. Use of the BCTI may assist women through a methodical and effective decision-making process. The BCTI may also be appropriate for research studiesinvolving the process and prediction of treatment selection since it meets requirements for ease of administration, brevity, reliability, and validity. / Department of Counseling Psychology and Guidance Services

Purpose: A systematic review and meta-analysis was conducted to test key predictions of the widely-studied ‘paranoia as defence’ model (more formally known as the ‘attribution–self-representation cycle’) proposed by Bentall, Corcoran, Howard, Blackwood, and Kinderman (2001), as applied to people with psychosis with persecutory delusions. A novel case series was also conducted to examine the feasibility and acceptability of collaborative psychological assessment and formulation of impaired treatment decision-making capacity (TDMC) among patients with psychosis, and produce preliminary data on safety and efficacy. Methods: With regard to the systematic review and meta-analysis, people with psychosis with persecutory delusions were compared to healthy controls, people with depression and people with psychosis without persecutory delusions (and, if specified, grandiose delusions) on a number of outcomes: externalising attributional bias, explicit self-esteem, implicit self-esteem and discrepancy between implicit and explicit self-esteem. Correlations between paranoia severity and each of these outcomes and self-esteem instability were also examined. In regards to the case series, a formulation of impaired TDMC for 5 patient participants was developed and shared with 13 clinician participants. Acceptability, utility, working alliance and safety were assessed through pre and post self-report and interview measures. Results: Sixty-three studies were included in the meta-analysis and systematic review, of which 33, 36, 10, 10 and 4 were used to test hypotheses on externalising attributional bias, explicit self-esteem, implicit self-esteem, implicit-explicit self-esteem discrepancy and selfesteem instability, respectively. Key model-consistent findings included the following: people with psychosis with persecutory delusions had a greater externalising attributional bias compared to all the other groups and a greater implicit-explicit self-esteem discrepancy than people with depression, and paranoia severity was positively correlated with externalising attributional bias and self-esteem instability. Key model-inconsistent findings included the following: people with psychosis with persecutory delusions had lower explicit self-esteem than healthy controls, and paranoia severity was negatively correlated with explicit self-esteem. There were also some model-inconclusive findings. Regarding the case series, 3 of the patient participants collaborated in the development of their formulation. They found the intervention safe and acceptable, following which they provided a much richer understanding of the factors that may impair their TDMC (Cohen’s d = 2.16). Two patient participants only partially adhered to the intervention protocol, but a psychological formulation was still feasible to produce and no adverse effects were reported. Clinician participants provided a much richer understanding of the factors that may impair the patient participants’ TDMC (Cohen’s d = 1.36; 95% CI = 0.63 to 2.07) after the presentation of the case formulations. Increases in knowledge, confidence and positive attitudes regarding supporting the TDMC of patients were observed. They strongly believed that the formulations cohered with their knowledge of the patient participants and were comprehensive and accurate. Conclusions: The findings of the systematic review and meta-analysis support a ‘weak’ version of the paranoia as defence model, which suggests persecutory delusions are only partially effective at protecting low implicit self-esteem from reaching awareness. The findings of the case series suggest that patients with psychosis, and their clinicians, can be engaged in a collaborative psychological assessment and formulation of factors that may impair their TDMC. Initial data from the case series also suggests this process is acceptable, safe and helpful.

Thesis (PhD)--Macquarie University, Division of Linguistics & Psychology, Department of Linguistics, 2003. / Bibliography: p. 397-424. / Introduction -- Models of shared decision-making in medicine -- Framing the study -- The analytic goals of modelling agency -- The context of treatment decision-making in HIV -- Agency and alignment -- Study conclusions and implications. / The quality of doctor-patient communication has been shown to influence treatment uptake, adherence and effectiveness in HIV medicine and elsewhere. Increasingly, it is considered essential that doctors and patients jointly participate in decisions concerning treatment. There is a growing body of literature describing joint decisionmaking and suggesting guidelines for its practice. Few of these studies, however, relate their descriptions of medical decision-making as a social process to the ways in which patterns of verbal interaction realize or foreclose on joint decision-making. -- Dominant models of medical decision-making view shared decision-making as a midpoint between enlightened paternalism and informed choice. Based on a corpus of HIV consultations audio-recorded in Sydney in the late 1990s, this thesis argues that it can be better modelled as a particular type of social process, which differs across a number of dimensions from other styles of medical decision-making, specifiable as contextual parameters of meaning. The thesis then identifies ways in which specific discursive practices realize these contextual parameters. -- A major component of the thesis focuses on agency, and a model is presented in the form of a socio-semantic network, drawing on work by van Leeuwen (1996) and others, which relates a range of grammatical features, not only transitivity patterns, to ways of construing social agency. The thesis then considers the way in which doctors and patients mobilise these and other resources for bringing together potentially conflicting points of view in framing and articulating treatment decisions. Here I draw on notions of mutual alignment (e.g., Goffman 1981) but expand the analysis of what is aligned to account for speakers' implicit discourse orientation, as well as more overt markers. -- Findings emphasise the relationship between representing and enacting agentive roles; the importance of doctors and patients mutually projecting each other's voices; and the variable and iterative character of shared decision-making. The research demonstrates how doctors and patients negotiate a complex, interactionally and symbolically mediated agency, and shows that patients often take the lead in developing more collaborative decision-making practice. There are still institutionally and socially determined limits to the degree of control patients may exercise within the consultation, many of which are of course well founded. / Mode of access: World Wide Web. / xvii, 533, [22] p. ill

D.Cur.( Psychiatric Nursing Science) / Please refer to full text to view abstract

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Professionals charged with planning treatment for abusive families often seek consultation during the process of making decisions about treatment. This study examined whether the level of experience of the consultant and the frame in which the case is presented affect conceptualizations and recommendations for treatment for cases of child abuse. To provide theoretical background for the study, a developmental ecological systems perspective on child abuse is presented. Research indicating that the most effective treatment for multiproblem abusive families addresses multiple ecological levels is reviewed. Consultants were forty members of Multidisciplinary Teams on Child Abuse and Neglect with treatment planning experience, 40 team members with related experience but no treatment planning experience, and 40 undergraduate psychology students with no experience in child protection (novices). Each consultant reviewed written copies of two case presentations of child abuse. One was presented in a frame emphasizing factors related to the individual abuser in the development of the abuse, the other in a frame presenting factors from multiple ecological levels in the development of the abuse. Consultants provided written recommendations and conceptualizations for each case, rated the effectiveness of interventions from four ecological levels in treatment of the abuse, and rated the importance of factors from the four ecological levels in development of the abuse. Results showed that the number of levels of recommendations provided increased as consultants’ experience increased. Treatment planners and consultants with related experience also rated multiple levels of intervention as more effective and as more important to the development of abuse than novices did. In ratings provided for these variables, treatment planners and consultants with related experience did not differ from each other. Individual framing of cases led to a higher percentage of individual level conceptualizations for all consultants. However, nonsignificant trends in the responses suggest that the treatment planners may be the least affected by framing of cases. The author reviews the implications these results have for clinical practice. / Ph. D.