Assessing patient information and decision-support needs in problematic alcohol use and co-occurring depression to inform shared decision-making interventions

2021 ◽  
Vol 85 (2) ◽  
pp. 143-176 ◽  
Author(s):  
Alana Fisher ◽  
Christina Marel ◽  
Maree Teesson ◽  
Katherine Mills
Keyword(s):  
Decision Making ◽  
Decision Support ◽  
Alcohol Use ◽  
Treatment Decision ◽  
Support Needs ◽  
Online Information ◽  
Difficult Patient ◽  
Treatment Decision Making ◽  
Problematic Alcohol ◽  
Problematic Alcohol Use

The authors assessed the informational and decision-support needs of patients, families, and clinicians when deciding on treatment for problematic alcohol use and depression. Patients (n = 56), family members (n = 16), and clinicians (n = 65) with experience deciding on treatment for problematic alcohol use and depression were eligible. Participants completed an online decisional needs assessment survey. Stakeholder groups identified numerous difficult patient-level treatment decisions and elevated decisional conflict. Participants preferred patient-led or shared treatment decision-making (75%-95.4%). Patients (32.6%) reported not being as involved in treatment decision-making as preferred, a higher proportion than reported by clinicians (16.4%; p = .056). More patients (19.6%) than clinicians (3.6%) reported clinician-led treatment decision-making, with little or no patient involvement (p = .022). Stakeholder preferences for future decision-support resources included online information for use outside consultations.

Size and influence of the decision support networks of women newly diagnosed with breast cancer.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18012-e18012
Author(s):  
Lauren P. Wallner ◽  
Yun Li ◽  
Chandler McLeod ◽  
Ann S Hamilton ◽  
Kevin C. Ward ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Decision Support ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Breast Cancer Treatment ◽  
Network Size ◽  
Support Networks ◽  
Newly Diagnosed ◽  
Treatment Decision Making

e18012 Background: Little is known about the size and characteristics of informal decision support networks of women diagnosed with breast cancer and whether involvement of informal decision supporters (DSP) influences breast cancer treatment decisions. Methods: A population-based sample of newly diagnosed breast cancer patients reported to the Georgia and Los Angeles SEER registries in 2014-15 were surveyed approximately 6 months after diagnosis (N = 2,502, 68% response rate). Network size was estimated by asking women to list up to 3 of the most important DSPs who helped them with locoregional therapy decisions. For each individual DSP listed, respondents reported how important each DSP’s opinion was in treatment decision making, and how satisfied they were with their involvement (5 pt. scales, “not at all” to “very”). Decision deliberation was measured using 5-items assessing degree patients thought through the decision, with higher scores reflecting more deliberative treatment decisions. We compared network size (0-3 or more) across patient-level characteristics and estimated the association between network size and deliberation using multivariable linear regression. Results: Of the 2,502 women in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years old, and black women were all more likely to report larger networks (all p < 0.001). Partnered women most often reported their partner as their main DSP (37.9%), whereas not partnered/unmarried women most often reported children (38.4%). The majority of women were highly satisfied with their DSP being involved in their decisions (76.5%) and 68.6% felt their DSP was very important in their decision making. Larger support networks were associated with more deliberative surgical treatment decision-making (p < 0.001). Conclusions: Most women engaged multiple DSPs in their treatment decision making, including spouses, children, and friends. Involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve breast cancer treatment decision making should acknowledge and engage informal DSPs.

scholarly journals The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study.

2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  
Keyword(s):  
Decision Making ◽  
Poor Prognosis ◽  
Family Members ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Treatment Preferences ◽  
Support Needs ◽  
State Of Health ◽  
Treatment Decision Making ◽  
Major Stroke

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.

scholarly journals The considerations, experiences and support needs of family members making treatment decisions for patients admitted with major stroke: a qualitative study.

2020 ◽  
Author(s):  
Akila Visvanathan ◽  
Gillian Mead ◽  
Martin Dennis ◽  
William Whiteley ◽  
Fergus Doubal ◽  
...  
Keyword(s):  
Decision Making ◽  
Poor Prognosis ◽  
Family Members ◽  
Treatment Decision ◽  
Treatment Decisions ◽  
Treatment Preferences ◽  
Support Needs ◽  
State Of Health ◽  
Treatment Decision Making ◽  
Major Stroke

Abstract Background Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient’s treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. Method Semi-structured interviews with family members (n=24) of patients with major stroke, within two weeks of hospital admission. Data were analysed thematically. Results Families’ approach to treatment decision-making lay on a spectrum according to the patient’s state of health pre-stroke (i.e. patient’s prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients’ deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. Conclusion The knowledge that family members’ treatment decision-making approaches lay on a spectrum depending on the patient’s state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient’s prognosis. This may enable doctors to provide information and support that is tailored towards family members’ needs.

scholarly journals Decision support networks of women newly diagnosed with breast cancer.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 157-157
Author(s):  
Lauren P. Wallner ◽  
Yun Li ◽  
Chandler McLeod ◽  
Ann S. Hamilton ◽  
Kevin C. Ward ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Decision Support ◽  
Cancer Treatment ◽  
Treatment Decision ◽  
Breast Cancer Treatment ◽  
Network Size ◽  
Support Networks ◽  
Newly Diagnosed ◽  
Treatment Decision Making

157 Background: Prior studies suggest that women often involve a network of family and friends in their cancer treatment decision making, yet very little is known about the size and characteristics of these decision support networks and whether their involvement leads to high-quality breast cancer treatment decisions. Methods: A weighted random sample of patients newly diagnosed with breast cancer in 2014-15 as reported to the Georgia and Los Angeles SEER registries were surveyed approximately 6 months after diagnosis (N = 2,502, 70% response rate). Network size was estimated by asking women to list up to 3 of the most important decision support people (DSP) who helped them make their locoregional therapy decisions. Decision deliberation was measured using 4-items assessing degree to which patients thought through the decision, with higher scores reflecting more deliberative breast cancer treatment decisions. We compared the size of the network (0-3+ people) across patient-level characteristics and estimated the adjusted mean deliberation scores across levels of network size using multivariable linear regression. Results: Of the 2,502 women included in this analysis, 51% reported having at least 3 DSPs, 20% reported 2, 18% reported 1, and 10% reported not having any DSPs. Among women who were not partnered (N = 961), 51% had 3 DSPs, 18% had 2, 16% had 1 and 16% had 0 DSPs. Of the DSPs that the respondents identified, the majority were children (30%), followed by partners/spouses (23%), friends (15%), siblings (10%), other family members (6%), and parents (5%). Married/partnered women (p < 0.001), those younger than 45 years old (p < 0.001), those with more than 1 comorbidity (p < 0.001), and black women (p = 0.02) were all more likely to report larger networks on average. Larger support networks were associated with more deliberative surgical decisions (p < 0.001). Conclusions: In this population-based sample, the majority of women engaged DSPs in their treatment decision making and for non-partnered patients, DSPs still played a key role in decision making. Larger size decision support networks were associated with higher quality decisions, underscoring the importance of efforts to identify and engage DSPs in the breast cancer decision making process.

Informal decision support networks and treatment decisions for breast cancer.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 24-24
Author(s):  
Sarah T. Hawley ◽  
Nancy K. Janz ◽  
Rose Juhasz ◽  
Steven J. Katz
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Decision Support ◽  
Family Member ◽  
Cancer Patients ◽  
Family Involvement ◽  
Treatment Decision ◽  
Support Networks ◽  
Breast Cancer Patients ◽  
Treatment Decision Making

24 Background: Although nearly 80% of breast cancer patients have someone with them during surgical consultations, there is little research that examines the extent, nature, or impact of informal decision support persons (DSPs) such as partner/spouse, other family members, or friends on breast cancer treatment decision making. Methods: Two data sources were used: 1) A population based sample of patients recently diagnosed in 2006/7 in the Detroit and Los Angeles SEER catchment areas completed a survey 9 months (N=1837, 72% response rate); and 2) A pilot survey study of a convenience sample of 150 breast cancer patients at three clinical sites surveyed within 18 months that examined more details on the extent and nature of informal decision support networks, including: a) quantity and type of DSPs involved in their treatments, b) number of appointments attended by DSPs, and c) patient-reported satisfaction with DSP’s involvement in treatment decision making. Results: Both a spouse/partner and another family member were very important in treatment decision-making for 33% of patients; a spouse/partner alone was very important for 19%; a family member alone was very important for 13%. A spouse/partner or friends were not important in treatment decision making for 24% of patients. Only 19% of patients reported that a friend was very important in treatment decision making. Friends were much more frequently endorsed among patients with family involvement (45%) vs those without family involvement (5%). Latina patients significantly more often reported that the opinion of a family member was very important vs. other race/ethnic groups (71% vs. 39%, p<0.001). Patients in the pilot study reported an average of 2.67 DSPs were involved in locoregional decision making (SD = 2.57 ) vs. an average of 0.8 (SD=1.03) for involvement in systemic treatment decision making. Conclusions: Many breast cancer patients rely on some informal decision support, but there is a very wide variation in the extent and nature of this support. Further work is needed to understand how to best incorporate DSPs into the treatment decision process. Additional findings will be presented to further describe the impact of informal treatment decision support for women with breast cancer.

Patients’ practices for taking the initiative in decision-making in outpatient psychiatric consultations

2017 ◽  
Vol 13 (2) ◽  
pp. 169-184 ◽  
Author(s):  
Shuya Kushida ◽  
Takeshi Hiramoto ◽  
Yuriko Yamakawa
Keyword(s):  
Decision Making ◽  
Conversation Analysis ◽  
Treatment Decision ◽  
Close Inspection ◽  
Important Resource ◽  
Treatment Decision Making ◽  
The Way

In spite of increasing advocacy for patients’ participation in psychiatric decision-making, there has been little research on how patients actually participate in decision-making in psychiatric consultations. This study explores how patients take the initiative in decision-making over treatment in outpatient psychiatric consultations in Japan. Using the methodology of conversation analysis, we analyze 85 video-recorded ongoing consultations and find that patients select between two practices for taking the initiative in decision-making: making explicit requests for a treatment and displaying interest in a treatment without explicitly requesting it. A close inspection of transcribed interaction reveals that patients make explicit requests under the circumstances where they believe the candidate treatment is appropriate for their condition, whereas they merely display interest in a treatment when they are not certain about its appropriateness. By fitting practices to take the initiative in decision-making with the way they describe their current condition, patients are optimally managing their desire for particular treatments and the validity of their initiative actions. In conclusion, we argue that the orderly use of the two practices is one important resource for patients’ participation in treatment decision-making.

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