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1.
J Rheumatol ; 2024 Jun 15.
Article in English | MEDLINE | ID: mdl-38825351

ABSTRACT

OBJECTIVE: Medication nonadherence in systemic lupus erythematosus (SLE) leads to poor clinical outcomes. We developed a clinician-led adherence intervention that involves reviewing real-time pharmacy refill data and using effective communication to address nonadherence. Prior pilot testing showed promising effects on medication adherence. Here, we describe further evaluation of how clinicians implemented the intervention and identify areas for improvement. METHODS: We audio recorded encounters of clinicians with patients who were nonadherent (90-day proportion of days covered [PDC] < 80% for SLE medications). We coded recordings for intervention components performed, communication quality, and time spent discussing adherence. We also conducted semistructured interviews with patients and clinicians on their experiences and suggestions for improving the intervention. We assessed change in 90-day PDC post intervention. RESULTS: We included 25 encounters with patients (median age 39, 100% female, 72% Black) delivered by 6 clinicians. Clinicians performed most intervention components consistently and exhibited excellent communication, as coded by objective coders. Adherence discussions took an average of 3.8 minutes, and 44% of patients had ≥ 20% increase in PDC post intervention. In structured interviews, many patients felt heard and valued and described being more honest about nonadherence and more motivated to take SLE medications. Patients emphasized patient-clinician communication and financial and logistical assistance as areas for improvement. Some clinicians wanted additional resources and training to improve adherence conversations. CONCLUSION: We provide further evidence to support the feasibility, acceptability, and fidelity of the adherence intervention. Future work will optimize clinician training and evaluate the intervention's effectiveness in a large, randomized trial.

2.
J Pediatr ; 262: 113596, 2023 11.
Article in English | MEDLINE | ID: mdl-37399922

ABSTRACT

OBJECTIVE: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians. STUDY DESIGN: Parents of infants with neurologic conditions in neonatal and pediatric intensive care units participated in a longitudinal decision-making study from 2018 through 2020. Parents completed semi-structured interviews upon enrollment, within 1 week after a conference with providers, at discharge, and 6 months post-discharge. We used a conventional content analysis approach and NVIVO 12 to analyze data related to mental health. RESULTS: We enrolled 61 parents (n = 40 mothers, n = 21 fathers) of 40 infants with neurologic conditions in the intensive care unit. In total, 123 interviews were conducted with 52 of these parents (n = 37 mothers, n = 15 fathers). Over two-thirds of parents (n = 35/52, 67%) discussed their mental health in a total of 61 interviews. We identified two key domains when approaching the data through the lens of mental health: (1) self-reported barriers to communicating mental health needs: parents shared uncertainty about the presence or benefit of support, a perceived lack of mental health resources and emotional support, and concerns about trust; (2) self-reported facilitators and benefits of communicating mental health needs: parents described the value of supportive team members, connecting to peer support, and speaking to a mental health professional or neutral third party. CONCLUSIONS: Parents of critically ill infants are at high risk of unmet mental health needs. Our results highlight modifiable barriers and actionable facilitators to inform interventions to improve mental health support for parents of critically ill infants.


Subject(s)
Disclosure , Mental Health , Infant, Newborn , Child , Female , Humans , Infant , Critical Illness/therapy , Critical Illness/psychology , Aftercare , Patient Discharge , Parents/psychology , Intensive Care Units, Neonatal
3.
Breast Cancer Res Treat ; 192(3): 517-527, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35107714

ABSTRACT

PURPOSE: Patients diagnosed with ductal carcinoma in situ (DCIS) face trade-offs when deciding among different treatments, including surgery, radiation, and endocrine therapy. A less chosen option is active monitoring. While evidence from clinical trials is not yet available, observational studies show comparable results for active monitoring and immediate treatment on cancer outcomes in select subgroups of patients. We developed and tested a web-based decision support tool (DST) to help patients explore current knowledge about DCIS and make an informed choice. METHODS: The DST, an interactive web application, was informed by literature reviews and formative work with patients, breast surgeons, and health communication experts. We conducted iterative interviews to evaluate the DST content among women with and without a history of breast cancer, as well as breast cancer experts. For usability testing, we conducted an online survey among women with and without a history of breast cancer. RESULTS: For content evaluation, 5 women with and 10 women without a history of DCIS were interviewed. The sample included 11 White and 4 non-White women, with a mean age of 64 years. The expert sample consisted of 5 attendings and a physician assistant. The feedback was used to add, clarify, or reorganize information in the DST. For usability testing, 22 participants with a mean age of 61 years were recruited including 15 White and 7 Black women and 6 women with a history of DCIS. The mean usability score was 3.7 out of 5. Most participants (86%) found that the DST provided unbiased information about treatments. To improve usability, we reduced the per-page content and added navigation cues. CONCLUSION: Content and usability evaluation showed that the DST helps patients explore trade-offs of active monitoring and immediate treatment. By adopting a personalized approach, the tool will enable informed decisions aligned with patients' values and expectations.


Subject(s)
Breast Neoplasms , Carcinoma, Intraductal, Noninfiltrating , Breast Neoplasms/diagnosis , Breast Neoplasms/therapy , Carcinoma, Intraductal, Noninfiltrating/diagnosis , Carcinoma, Intraductal, Noninfiltrating/therapy , Female , Humans , Internet , Middle Aged , User-Centered Design , User-Computer Interface
4.
J Pediatr ; 245: 81-88.e3, 2022 06.
Article in English | MEDLINE | ID: mdl-35227757

ABSTRACT

OBJECTIVE: To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions. STUDY DESIGN: In this prospective cohort study, we enrolled parents of infants with neurologic conditions in the intensive care unit (ICU). Hospital discharge surveys included the validated Family Satisfaction with the ICU (FS-ICU) decision making subscale, Decision Regret Scale (DRS), and Decisional Conflict Scale (DCS). We defined high satisfaction with decision making as an FS-ICU score ≥75, high decisional regret/conflict as DRS/DCS score >25, and within-couple disagreement as a difference of at least 25 points between scores. RESULTS: We enrolled 61 parents of 40 infants (n = 40 mothers, n = 21 fathers); 35 mothers and 15 fathers completed surveys. Most mothers reported high satisfaction with decision making (27 of 35; 77%) and low decision regret (28 of 35; 80%); 40% (14 of 35) reported high decisional conflict. Mothers and fathers reported higher decisional conflict in the domains of uncertainty and values clarity compared with the domain of effective decision making (Bonferroni-corrected P < .05). There were no differences in decision outcomes between paired mothers and fathers; however, within any given couple, there were numerous instances of disagreement (7 of 15 for decision regret and 5 of 15 for decisional conflict). CONCLUSIONS: Many parents experience decisional conflict even if they ultimately have high satisfaction and low regret, underscoring the need for decision aids targeting uncertainty and values clarity. Couples frequently experience different levels of decisional regret and conflict.


Subject(s)
Decision Making , Personal Satisfaction , Emotions , Humans , Infant , Parents , Prospective Studies
5.
J Gen Intern Med ; 37(12): 2991-2997, 2022 09.
Article in English | MEDLINE | ID: mdl-35212877

ABSTRACT

BACKGROUND: Fragmented communication with patients and families during hospitalizations often leaves patients confused about the daily plan. OBJECTIVE: To pilot a supplemental text message-based platform for improving bidirectional communication about the clinical plan and patients' goals. DESIGN: Randomized controlled trial PARTICIPANTS: Thirty adult patients, thirty caregivers of pediatric patients, and the interns caring for them on inpatient general medicine and pediatric services. INTERVENTIONS: Patients and caregivers were texted or emailed daily to report their personal goal and assess their understanding of the team's clinical plan. Interns were texted daily to report the team's clinical plan and to assess their understanding of the patient's personal goal. MAIN MEASURES: Primary outcomes were feasibility, defined as survey response rates, and acceptability. Secondary outcomes were patient comprehension of the clinical plan, trainee comprehension of the patient's goal, patient-centered communication scores, and educational satisfaction scores. KEY RESULTS: Thirty adult patients, thirty caregivers of pediatric patients, fourteen general medicine interns, and six general pediatric interns enrolled. Intervention feasibility was met, with survey response rates of 80% for general medicine trainees, 67% for general pediatric trainees, 58% for adult patients, and 70% for caregivers. Patients and caregivers in the intervention arm had higher understanding of medication changes (76% vs 50%, p = 0.02) and new consultations (90% vs 61%, p = 0.002). Interns had higher understanding of patients' goals in the intervention arm (93% vs 40%, p < 0.001), particularly for adult patients (97% vs 17%, p < 0.001). Caregivers rated communication higher regarding information to help make decisions (p = 0.04). Interviews demonstrated high acceptability. CONCLUSIONS: Our text message-based communication intervention was feasible and acceptable to all involved participants, with preliminary signals of efficacy. The intervention may contribute to improved understanding of medication changes and new consultations, as well as help in making decisions. A large, randomized efficacy trial of this intervention is warranted. Graphical abstract.


Subject(s)
Text Messaging , Adult , Caregivers , Child , Communication , Feasibility Studies , Humans , Surveys and Questionnaires
6.
Matern Child Health J ; 26(5): 963-969, 2022 May.
Article in English | MEDLINE | ID: mdl-35235142

ABSTRACT

INTRODUCTION: Smoking during pregnancy can affect infant birthweight. We tested whether an intervention that promoted scheduled gradual reduction improved birth outcomes among pregnant women who smoked. We also examined race differences in birth outcomes. METHODS: We conducted a 2-arm randomized controlled trial where pregnant women who smoked received either SMS text-delivered scheduled gradual smoking reduction (SGR) program plus support texts or support messages only throughout their pregnancy. The outcomes for this paper were birth outcomes including birth weight and gestational age obtained from chart review. Analyses were conducted using chi-square and t-tests in SAS. RESULTS: We approached 2201 pregnant women with smoking history. Of the 314 women recruited into the study, 290 completed a medical release form (92%). We did not find any significant differences in birth outcomes by arm or race. The majority of participants reduced smoking by the 80%. Women who reduced more than 50% of their baseline cigarettes per day had a birth weight increase of 335 g compared to those that did not (p = 0.05). The presence of alcohol/drug use in prenatal visit notes was associated with low infant birth weight (p = 0.05). DISCUSSION: The scheduled gradual reduction intervention did not improve birth outcomes. Additional research is needed to help improve birth outcomes for pregnant women who engage in tobacco and illicit substance use. CLINICAL TRIAL #: NCT01995097.


Subject(s)
Smoking Cessation , Smoking Reduction , Substance-Related Disorders , Birth Weight , Female , Humans , Infant , Male , Pregnancy , Pregnant Women , Smoking/epidemiology
7.
Matern Child Health J ; 26(1): 24-30, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34860350

ABSTRACT

OBJECTIVE: The purpose of this paper was to examine changes in situational temptations to smoke among women in early to late pregnancy enrolled in a texting trial to help them quit smoking. We compared changes between (1) intervention arms, (2) those who quit, (3) those who reduced by 50% or more, and (4) those who reduced by less than 50%. We also examined cravings overtime in the intervention arm and the relationship between real-time cravings assessed via text message and situational temptations. METHODS: This was a secondary analysis of the Baby Steps trial, a randomized controlled trial testing the efficacy of a text-based scheduled gradual reduction (SGR) intervention on cessation. We used t-tests to examine changes across intervention arms and repeated measured proc mixed to explore changes in situational temptations and cravings. RESULTS: Among all women, situational temptations decreased from early to late pregnancy for the positive, negative, and habitual subscales, (ps < 0.001). We found no difference in situational temptations across arms. We found a positive relationship between negative situational temptation and average craving during the Weeks 2 and Weeks 3 of the intervention. Negative ST increased by 0.11 for each unit increase of craving at Week 2. CONCLUSIONS: As women progress through pregnancy their temptation to smoke reduces. A different relationship might exist, however with negative affect situations in which women reported higher craving but not in response to other temptations. Future work might have a particular focus on the intersection of negative affect with cravings and temptations to promote cessation during pregnancy. CLINICAL TRIAL: NCT01995097.


Subject(s)
Smokers , Smoking Cessation , Female , Health Behavior , Humans , Motivation , Pregnancy , Smoking
8.
Support Care Cancer ; 29(12): 7339-7349, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34050402

ABSTRACT

PURPOSE: Cancer survivors are often sedentary. Self-monitoring may promote physical activity through self-activation. We conducted a pilot trial to evaluate whether wearable activity tracker with personalized text message feedback would increase physical activity. METHODS: We enrolled 30 patients with solid tumor cancers into a non-randomized prospective intervention trial (NCT02627079): 15 had completed treatment in the past year and 15 under active treatment. Each participant received an activity tracker and daily text messages personalized to their activity level. We assessed patient-reported outcomes and 6-min walk (6 MW) at baseline and 3 months. RESULTS: Twenty-six participants completed the study. There was substantial variation in baseline activity. Overall, 39% of participants increased their steps taken by at least 20%, and 23% increased their 6 MW distance by 20% or more. More participants who had completed treatment strongly agreed (73%) that the intervention increased their exercise levels than those receiving active treatment (47%). At 3 months, there was a significant improvement in median Beck Depression Inventory-II and Godin Leisure Index composite scores. At 6 months, 72% still wore their activity tracker at least 4 days per week. CONCLUSION: We found that the intervention was well-accepted with a high completion rate at 3 months and continued self-use at 6 months. In this pilot study of combined activity tracker and motivational messaging, we found a signal for increased physical activity over a 3-month period. Future research is needed to study this technique for its impact on activity and other physical and psychological measures of well-being. IMPLICATION FOR CANCER SURVIVORS: Activity tracker with personalized motivational messaging may be useful in promoting physical activity in cancer survivors.


Subject(s)
Cancer Survivors , Neoplasms , Text Messaging , Exercise , Humans , Motivation , Neoplasms/therapy , Pilot Projects , Prospective Studies
9.
Support Care Cancer ; 29(7): 3563-3569, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33159220

ABSTRACT

PURPOSE: Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their prognosis and treatment risk. While decision aids can improve illness understanding and reduce decisional conflict, there are no validated decision aids for AML. We developed and tested a novel AML decision aid (NCT03442452). METHODS: Patients (n = 20) were recruited at Duke University from May 2018 to February 2019. Participants completed assessments of AML knowledge and decisional conflict, before and after using the electronic decision aid. The primary endpoint was feasibility (endpoint met if > 80% of study participants completed all study components). Secondary analyses of efficacy were conducted using paired t tests for dependent pre-/post-samples. RESULTS: The primary endpoint of feasibility was met (100% of participants completed all study components). Secondary analyses showed improved knowledge and reduced decisional conflict after using the decision aid. Knowledge scores improved from a mean of 11.8 (out of 18) correct items at baseline to 15.1 correct items after using the decision aid (mean difference 3.35; p < 0.0001). Decisional conflict scores reduced significantly from baseline to post-test as well (mean difference - 6.5; p = 0.02). CONCLUSION: These findings suggest that our AML decision aid is a useful tool to improve the patient experience and promote shared decision-making in AML. A randomized efficacy trial is planned.


Subject(s)
Decision Making/ethics , Decision Support Techniques , Health Knowledge, Attitudes, Practice , Leukemia, Myeloid, Acute/therapy , Female , Humans , Knowledge , Male , Middle Aged
10.
Age Ageing ; 50(4): 1382-1390, 2021 06 28.
Article in English | MEDLINE | ID: mdl-33890622

ABSTRACT

BACKGROUND: Many older adults with severe dementia receive potentially life-extending treatments even when caregivers do not wish to prolong their life inappropriately. OBJECTIVE: Explore factors that influence caregiver preferences for potentially life-extending treatments for older adults with severe dementia, and reasons for discordance between overall end-of-life care goal and treatment preferences. DESIGN: Semi-structured in-depth interviews asking caregivers their overall end-of-life care goal for older adults and preferences for intravenous (IV) antibiotics, tube feeding and cardiopulmonary resuscitation (CPR). PARTICIPANTS: A total of 26 caregivers of community-dwelling older adults with severe dementia in Singapore. APPROACH: Reflexive thematic analysis. RESULTS: Most caregivers' (77%) overall end-of-life care goal was 'no life extension'. Yet, 80% preferred IV antibiotics for a life-threatening infection, 60% preferred tube feeding and 45% preferred CPR. Caregivers preferred these treatments because they (1) perceived letting go by withholding treatments as unethical, (2) felt they had no choice as they deferred to the health care provider, (3) wanted to alleviate suffering rather than extend life and (4) desired trying minimally invasive treatments that had the potential to be withdrawn. Themes explaining discordance were (1) feared regret about making the 'wrong' decision, (2) considered treatments to address immediate needs even when long-term goal did not match providing that treatment and (3) anticipated disagreement with other family members on overall goal of care. CONCLUSION: To reduce discordance between caregivers' overall end-of-life care goal and preferences for life-extending treatments, clinicians can use a shared decision-making approach involving discussions of both their overall end-of-life care goal and treatment preferences.


Subject(s)
Caregivers , Dementia , Aged , Dementia/diagnosis , Dementia/therapy , Family , Goals , Humans , Singapore
11.
AIDS Behav ; 24(7): 2054-2061, 2020 Jul.
Article in English | MEDLINE | ID: mdl-31900813

ABSTRACT

Many people living with HIV (PLWHIV) state that they would be willing to take significant risks to be "cured" of the virus. However, how they interpret the word "cure" in this context is not clear. We used a randomized survey to examine whether PLWHIV had a different willingness to take a hypothetical HIV medication if it causes flu-like symptoms, but provides: (a) cure, (b) remission that was labeled "cure", or (c) remission. PLWHIV (n = 454) were more willing to take a medication that provided a "cure" versus a "remission" if the side effects lasted less than 1 year. PLWHIV were more willing to take a medication that provided a remission that was labeled "cure" versus a "remission" (p = 0.01) if the side effects lasted 2 weeks. Clinicians and researchers should be aware of the impact of the word "cure" and ensure that PLWHIV fully understand the possible outcomes of their treatment options.


Subject(s)
Decision Making , HIV Infections/drug therapy , HIV Infections/psychology , Patients/psychology , Research Personnel/psychology , Drug Therapy/psychology , Female , Humans , Intention , Male , Middle Aged , Surveys and Questionnaires
12.
Nicotine Tob Res ; 22(7): 1187-1194, 2020 06 12.
Article in English | MEDLINE | ID: mdl-31647564

ABSTRACT

INTRODUCTION: Smoking during pregnancy poses serious risks to baby and mother. Few disseminable programs exist to help pregnant women quit or reduce their smoking. We hypothesized that an SMS text-delivered scheduled gradual reduction (SGR) program plus support texts would outperform SMS support messages alone. METHODS: We recruited 314 pregnant women from 14 prenatal clinics. Half of the women received theory-based support messages throughout their pregnancy to promote cessation and prevent relapse. The other half received the support messages plus alert texts that gradually reduced their smoking more than 3-5 weeks. We conducted surveys at baseline, end of pregnancy, and 3 months postpartum. Our primary outcome was biochemically validated 7-day point prevalence abstinence at late pregnancy. Our secondary outcome was reduction in cigarettes per day. RESULTS: Adherence to the SGR was adequate with 70% responding to alert texts to smoke within 60 minutes. Women in both arms quit smoking at the same rate (9%-12%). Women also significantly reduced their smoking from baseline to the end of pregnancy from nine cigarettes to four; we found no arm differences in reduction. CONCLUSIONS: Support text messages alone produced significant quit rates above naturally occurring quitting. SGR did not add significantly to helping women quit or reduce. Sending support messages can reach many women and is low-cost. More obstetric providers might consider having patients who smoke sign up for free texting programs to help them quit. IMPLICATIONS: A disseminable texting program helped some pregnant women quit smoking.Clinical Trial Registration number: NCT01995097.


Subject(s)
Health Behavior , Smokers/psychology , Smoking Cessation/methods , Smoking/therapy , Text Messaging/statistics & numerical data , Adult , Female , Humans , Pregnancy , Smoking/psychology , Surveys and Questionnaires
13.
Health Expect ; 23(1): 220-228, 2020 02.
Article in English | MEDLINE | ID: mdl-31682064

ABSTRACT

OBJECTIVE: Patient involvement in treatment decisions is recommended in clinician-patient encounters. Little is known about how oncologists engage patients in shared decision making in non-Western countries. We assessed the prevalence of shared decision making among Singaporean oncologists and analysed how they discussed prognosis. METHODS: We audio-recorded 100 consultations between advanced cancer patients and their oncologists. We developed a coding system to assess oncologist encouragement of patient participation in decision making and disclosure of an explicit prognosis. We assessed patient and oncologist characteristics that predicted these behaviours. RESULTS: Forty-one consultations involved treatment discussions. Oncologists almost always listed more than one treatment option (90%). They also checked patient understanding (34%), discussed pros and cons (34%) and addressed uncertainty (29%). Oncologists discussed prognosis mostly qualitatively (34%) rather than explicitly (17%). They were more likely to give an explicit prognosis when patients/caregivers asked questions related to prognosis. CONCLUSION: Oncologists in our sample engaged their patients in decision making. They have areas in which they can improve to involve patients at a deeper level to ensure shared decision making. Findings will be used to develop an intervention targeting oncologists and patients to promote patient involvement in decision making.


Subject(s)
Caregivers/statistics & numerical data , Decision Making, Shared , Neoplasms/therapy , Oncologists/statistics & numerical data , Patients/statistics & numerical data , Referral and Consultation , Adult , Female , Humans , Male , Middle Aged , Patient Participation , Prognosis , Singapore , Surveys and Questionnaires
14.
Matern Child Health J ; 24(4): 419-422, 2020 Apr.
Article in English | MEDLINE | ID: mdl-32026323

ABSTRACT

INTRODUCTION: Most pregnant women know that smoking poses serious risks to baby and mother, yet many still smoke. We conducted a large randomized controlled trial and found that an SMS text-delivered program helped about 10% of these women quit smoking. In this paper, we describe the feasibility of disseminating a text-based intervention to pregnant women who smoke. METHODS: We tested dissemination in two ways from prenatal clinics and compared recruitment rates to those found in our large randomized controlled trial. The first method involved "direct texting" where study staff identified women who smoked and sent them a text asking them to text back if they wanted to receive texts to help them quit. The second involved "nurse screening" where clinic staff from county health departments screened women for smoking and asked them to send a text to the system if they wanted to learn more about the program. Our primary outcome was feasibility assessed by the number of women who texted back their baby's due date, which served as "enrolling" in the texting program, which we compared to the recruitment rate we found in our large trial. RESULTS: Over 4 months, we texted 91 women from the academic health system. Of those, 17 texted back and were counted as "enrolled." In the health departments, across the 4 months, 12 women texted the system initially. Of those, 10 were enrolled. This rate was similar to the rate enrolled in the randomized controlled trial. DISCUSSION: Two different methods connected pregnant women who smoke to a texting program. One of these methods can be automated further and have the potential of helping many women quit smoking with minimal effort. Clinical Trial # NCT01995097.


Subject(s)
Pregnant Women/psychology , Smokers/psychology , Smoking Cessation/psychology , Text Messaging/standards , Adult , Female , Humans , Pilot Projects , Pregnancy , Smokers/statistics & numerical data , Smoking Cessation/methods , Smoking Cessation/statistics & numerical data , Text Messaging/instrumentation , Text Messaging/statistics & numerical data , Tobacco Products/adverse effects
15.
Support Care Cancer ; 26(3): 957-965, 2018 Mar.
Article in English | MEDLINE | ID: mdl-28993888

ABSTRACT

PURPOSE: Patients with advanced cancer and their caregivers experience many negative emotions. Empathic responses from oncologists can help alleviate their distress. We aimed to assess expressions of negative emotions among patients with advanced cancer and their caregivers and oncologists' empathic responses during consultations in an Asian setting. We also assessed the association between oncologists' expression of empathy and patients' and caregivers' perception of communication quality. METHODS: We surveyed 100 patients with advanced cancer and their caregivers and audio recorded consultations with their oncologists. We coded expressions of negative emotions by patients and caregivers and oncologists' empathic responses. We also surveyed participating oncologists (n = 30) about their confidence in expressing empathy and perceived communication behavior outcomes. RESULTS: About 52% of patients and 49% of caregivers expressed at least one negative emotion during the consultation, though 59% of patients and 48% of caregivers reported not wanting to discuss negative emotions. Oncologists responded empathically to 12% of patients' negative emotions and 9% of caregivers' negative emotions, despite 92% of them reporting confidence in expressing empathy. Oncologists' expression of empathy did not vary significantly by patient, caregiver, or their own demographic characteristics. It also did not differ based on their confidence in expressing empathy and positive outcome expectations. When oncologists responded empathically just one time, patients perceived communication more favorably. CONCLUSIONS: In this Asian setting, patients and caregivers commonly expressed negative emotions. Oncologists' expressed empathy infrequently, although when they were empathic, it was related to improved patient perception of communication quality.


Subject(s)
Caregivers/psychology , Communication , Emotions/physiology , Neoplasms/psychology , Oncologists/psychology , Asian People , Ethnicity , Female , Humans , Male , Middle Aged , Neoplasms/ethnology , Perception , Surveys and Questionnaires
16.
Support Care Cancer ; 26(4): 1197-1205, 2018 Apr.
Article in English | MEDLINE | ID: mdl-29101469

ABSTRACT

PURPOSE: The research on cancer treatment decision-making focuses on dyads; the full "triad" of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to treatment for advanced cancer. METHODS: At an academic cancer center, we enrolled adult patients with advanced gastrointestinal or hematological malignancies, their caregivers, and their oncologists. Triad members completed a semi-structured qualitative interview and a survey measuring decisional conflict and perceived influence of the other triad members on treatment decisions. RESULTS: Seventeen patients, 14 caregivers, and 10 oncologists completed the study. Patients and caregivers reported little decisional regret and voiced high satisfaction with their decisions, but levels of decisional conflict were high. We found sizeable disagreement among triad members' perceptions and preferences. For example, patients and oncologists disagreed about the caregiver's influence on the decision 56% of the time. In addition, many patients and caregivers preferred to defer to their oncologist about treatment decisions, felt like no true decision existed, and disagreed with their oncologist about how many treatment options had been presented. CONCLUSIONS: Patients, caregivers, and oncologists have discordant perceptions of the cancer treatment decision-making process, and bring different preferences about how they want to make decisions. These data suggest that oncologists should assess patients' and caregivers' decisional preferences, explicitly signal that a decision needs to be made whenever approaching an important crossroads in treatment and ensure that patients and caregivers understand the full range of presented options.


Subject(s)
Caregivers/psychology , Decision Making/ethics , Neoplasms/therapy , Oncologists/psychology , Patients/psychology , Adult , Aged , Female , Humans , Male , Middle Aged , Neoplasms/pathology , Perception , Pilot Projects , Surveys and Questionnaires
17.
Fam Process ; 57(3): 629-648, 2018 09.
Article in English | MEDLINE | ID: mdl-29603202

ABSTRACT

Many couples tend to report steadily decreasing relationship quality following the birth of a child. However, little is known about the postpartum period for Latino couples, a rapidly growing ethnic group who are notably underserved by mental and physical health caregivers in the United States. Thus, this study investigated whether a brief couples' intervention focused on helping couples support each other while increasing healthy behaviors might improve dyadic functioning postpartum. This study presents secondary analyses of data regarding couple functioning from a larger randomized controlled trial with 348 Latino couples to promote smoking cessation. Portions of the intervention taught the couple communication and problem-solving skills to increase healthy behavior. Couples participated in four face-to-face assessments across 1 year starting at the end of the first trimester. Latent growth curve analyses revealed that the treatment group reported an increase in relationship satisfaction and constructive communication after the intervention, which diminished by 1-year follow-up, returning couples to their baseline levels of satisfaction. Results suggest that incorporating a brief couple intervention as part of a larger health intervention for Latinos may prevent postpartum decreases in relationship satisfaction.


Subject(s)
Couples Therapy/methods , Hispanic or Latino/psychology , Postpartum Period , Pregnant Women/psychology , Sexual Partners/psychology , Spouses/psychology , Adult , Communication , Family Characteristics/ethnology , Female , Health Behavior/ethnology , Humans , Interpersonal Relations , Longitudinal Studies , Male , Personal Satisfaction , Postpartum Period/ethnology , Postpartum Period/psychology , Pregnancy , Pregnant Women/ethnology , Spouses/ethnology , Treatment Outcome , United States
18.
J Cancer Educ ; 33(6): 1323-1327, 2018 12.
Article in English | MEDLINE | ID: mdl-28707205

ABSTRACT

Long-term care for head and neck cancer (HNC) survivors is complex and requires coordination among multiple providers. Clinical practice guidelines highlight the role of primary care providers (PCPs) in screening for secondary cancer/recurrence, assessment of late/long-term side effects, and referrals for appropriate specialty management of toxicity. However, these responsibilities may be difficult to meet within the scope of primary care practice. We conducted this study to explore preferences, comfort, and knowledge of PCPs in the care of HNC survivors. We piloted a 40-item web-based survey developed with oncologist and PCP input targeted for family medicine and internal medicine providers. Responses were collected within a single university health system over 2 months. PCPs (n = 28; RR = 11.3%) were interested in learning about health promotion after cancer treatment (89%) and generally agree that their current practice patterns address healthy lifestyle behaviors (82%). However, only 32% of PCPs felt confident they could manage late/long-term side effects of chemotherapy, radiation, or surgery. Only 29% felt confident they could provide appropriate cancer screening. Looking at shared care responsibilities with oncology providers, PCPs perceived being responsible for 30% of care in the first year after treatment and 81% of care after 5 years. Seventy-one percent of PCPs agreed that oncologists provided them necessary information, yet 32% of PCPs found it difficult to coordinate with cancer providers. While these PCPs perceive increased care responsibility for long-term survivors, most are uncomfortable screening for recurrence and managing late/long-term side effects. Education and mutual coordination between PCPs and oncology providers may improve survivor care.


Subject(s)
Cancer Survivors/statistics & numerical data , Continuity of Patient Care/standards , Head and Neck Neoplasms/rehabilitation , Health Knowledge, Attitudes, Practice , Oncologists/psychology , Primary Health Care/organization & administration , Survivorship , Cancer Survivors/psychology , Continuity of Patient Care/statistics & numerical data , Delivery of Health Care , Humans , Oncologists/statistics & numerical data , Pilot Projects , Practice Patterns, Physicians'/standards , Primary Health Care/statistics & numerical data , Surveys and Questionnaires
19.
Psychooncology ; 26(12): 2063-2068, 2017 Dec.
Article in English | MEDLINE | ID: mdl-27862591

ABSTRACT

BACKGROUND: Patients with acute myeloid leukemia (AML) face a unique, difficult situation characterized by sudden changes in health, complex information, and pressure to make quick treatment decisions amid sizeable tradeoffs. Yet, little is known about patients' experiences with AML. We used qualitative methods to learn about their experiences with diagnosis and treatment decision-making to identify areas for improvement. METHODS: We recruited hospitalized patients with AML to participate in semi-structured qualitative interviews about their experiences being diagnosed with AML, receiving information, and making a treatment decision. Interviews were conducted during their hospitalization for induction chemotherapy. We analyzed data by using a constant comparison approach. RESULTS: Thirty-two patients completed an interview. Four main themes emerged: (a) shock and suddenness, (b) difficulty processing information, (c) poor communication, and (d) uncertainty. Patients frequently described their diagnosis as shocking. They also felt that the amount of information was too great and too difficult to process, which negatively impacted their understanding. Patients frequently described a lack of emotional support from clinicians and described uncertainty about their prognosis, the number and nature of available treatments, and what to expect from treatment. CONCLUSIONS: Acute myeloid leukemia poses a sudden, emotionally challenging, information-laden situation, where little time is available to make important decisions. This results in difficulty processing information and is sometimes complicated by a lack of emotive communication from clinicians. Results indicate a need for targeted interventions to improve AML patients' understanding of illness and treatment options and to address their traumatic experiences around diagnosis.


Subject(s)
Decision Making , Health Knowledge, Attitudes, Practice , Leukemia, Myeloid, Acute/psychology , Uncertainty , Adult , Aged , Emotions , Female , Humans , Interviews as Topic , Leukemia, Myeloid, Acute/diagnosis , Leukemia, Myeloid, Acute/therapy , Male , Middle Aged , Qualitative Research
20.
Nicotine Tob Res ; 18(10): 1960-6, 2016 10.
Article in English | MEDLINE | ID: mdl-27091830

ABSTRACT

INTRODUCTION: Most pregnant women who quit smoking return to smoking postpartum. Trials to prevent this return have been unsuccessful. We tested the efficacy of a nurse-delivered intervention in maintaining smoking abstinence after delivery among pregnant women who quit smoking that was tailored on their high risk of relapse (eg, had strong intentions to return). METHODS: We recruited 382 English-speaking spontaneous pregnant quitters from 14 prenatal clinics and randomized them to receive either a smoking abstinence booklet plus newsletters about parenting and stress (control) or a nurse-delivered smoking abstinence intervention that differed in intensity for the high and low risk groups. Our primary outcome was smoking abstinence at 12 months postpartum. RESULTS: Using intent-to-treat analyses, there was a high rate of biochemically validated smoking abstinence at 12 months postpartum but no arm differences ( CONTROL: 36% [95% confidence interval [CI]: 29-43] vs. INTERVENTION: 35% [95% CI: 28-43], P = .81). Among women at low risk of returning to smoking, the crude abstinence rate was significantly higher in the control arm (46%) than in the intervention arm (33%); among women at high risk of returning to smoking, the crude abstinence rate was slightly lower but not different in the control arm (31%) than in the intervention arm (37%). CONCLUSIONS: Low-risk women fared better with a minimal intervention that focused on parenting skills and stress than when they received an intensive smoking abstinence intervention. The opposite was true for women who were at high risk of returning to smoking. Clinicians might need to tailor their approach based on whether women are at high or low risk of returning to smoking. IMPLICATIONS: Results suggest that high-risk and low-risk women might benefit from different types of smoking relapse interventions. Those who are lower risk of returning to smoking might benefit from stress reduction that is devoid of smoking content, whereas those who are higher risk might benefit from smoking relapse prevention.


Subject(s)
Pamphlets , Practice Patterns, Nurses' , Secondary Prevention , Smoking Cessation/methods , Smoking Prevention , Adult , Female , Humans , Obstetric Nursing , Postpartum Period , Pregnancy , Treatment Outcome
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