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1.  Patients’ and Family Members’ Views on Patient-Centered Communication During Cancer Care 
Psycho-oncology  2013;22(11):10.1002/pon.3317.
Objectives
To explore patients’ and family members’ views on communication during cancer care, and to identify those aspects of clinician-patient communication which were most important to patients and family members.
Methods
We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory.
Results
Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient’s experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, while excellent listening could foster the relationship. Information exchange and relationship were also integral to decision making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients’ needs beyond the immediate medical encounter were valued.
Conclusions
The complexity of cancer care today suggest that efforts to improve communication must be multi-level, acknowledging and addressing patient, clinician, organizational and policy barriers and facilitators. Measurement tools are needed to assess cancer patients’ and family members’ experiences with communication over the course of cancer care in order to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer.
doi:10.1002/pon.3317
PMCID: PMC3808529  PMID: 23780672
2.  Assessing Patient-Centered Communication in Cancer Care: Stakeholder Perspectives 
Journal of Oncology Practice  2013;9(5):e186-e193.
Patient reports of their communication experiences during cancer care could increase understanding of the communication process, stimulate improvements, inform interventions, and provide a basis for evaluating changes in communication practices.
Purpose:
Patient-centered communication is critical to quality cancer care. Effective communication can help patients and family members cope with cancer, make informed decisions, and effectively manage their care; suboptimal communication can contribute to care breakdowns and undermine clinician-patient relationships. The study purpose was to explore stakeholders' views on the feasibility and acceptability of collecting self-reported patient and family perceptions of communication experiences while receiving cancer care. The results were intended to inform the design, development, and implementation of a structured and generalizable patient-level reporting system.
Methods:
This was a formative, qualitative study that used semistructured interviews with cancer patients, family members, clinicians, and leaders of health care organizations. The constant comparative method was used to identify major themes in the interview transcripts.
Results:
A total of 106 stakeholders were interviewed. Thematic saturation was achieved. All stakeholders recognized the importance of communication and endorsed efforts to improve communication during cancer care. Patients, clinicians, and leaders expressed concerns about the potential consequences of reports of suboptimal communication experiences, such as damage to the clinician-patient relationship, and the need for effective improvement strategies. Patients and family members would report good communication experiences in order to encourage such practices. Practical and logistic issues were identified.
Conclusion:
Patient reports of their communication experiences during cancer care could increase understanding of the communication process, stimulate improvements, inform interventions, and provide a basis for evaluating changes in communication practices. This qualitative study provides a foundation for the design and pilot testing of such a patient reporting system.
doi:10.1200/JOP.2012.000772
PMCID: PMC3770509  PMID: 23943884
3.  More Than Words: Patients' Views on Apology and Disclosure When Things Go Wrong in Cancer Care 
Patient education and counseling  2011;90(3):341-346.
Objective
Guidelines on apology and disclosure after adverse events and errors have been in place for over five years. This study examines whether patients consider recommended responses to be appropriate and desirable, and whether clinicians' actions after adverse events are consistent with recommendations.
Methods
Patients who believed that something had gone wrong during their cancer care were identified. During in-depth interviews, patients described the event, clinicians' responses, and their reactions.
Results
78 patients were interviewed. Patients' valued apology and expressions of remorse, empathy and caring, explanation, acknowledgement of responsibility, and efforts to prevent recurrences, but these key elements were often missing. For many patients, actions and evidence of clinician learning were most important.
Conclusion
Patients' reports of apology and disclosure when they believe something has gone wrong in their care suggest that clinicians' responses continue to fall short of expectations.
Practice Implications
Clinicians preparing to talk with patients after an adverse event or medical error should be aware that patients expect their actions to be congruent with their words of apology and caring. Healthcare systems need to support clinicians throughout the disclosure process, and facilitate both system and individual learning to prevent recurrences.
doi:10.1016/j.pec.2011.07.010
PMCID: PMC3214230  PMID: 21824739
4.  Toward Patient-Centered Cancer Care: Patient Perceptions of Problematic Events, Impact, and Response 
Journal of Clinical Oncology  2012;30(15):1784-1790.
Purpose
Cancer treatments are complex, involving multiple clinicians, toxic therapies, and uncertain outcomes. Consequently, patients are vulnerable when breakdowns in care occur. This study explored cancer patients' perceptions of preventable, harmful events; the impact of these events; and interactions with clinicians after such events.
Patients and Methods
In-depth telephone interviews were conducted with cancer patients from three clinical sites. Patients were eligible if they believed: something “went wrong” during their cancer care; the event could have been prevented; and the event caused, or could have caused, significant harm. Interviews focused on patients' perceptions of the event, its impact, and clinicians' responses to the event.
Results
Ninety-three of 416 patients queried believed something had gone wrong in their care that was preventable and caused or could have caused harm. Seventy-eight patients completed interviews. Of those interviewed, 28% described a problem with medical care, such as a delay in diagnosis or treatment; 47% described a communication problem, including problems with information exchange or manner; and 24% described problems with both medical care and communication. Perceived harms included physical and emotional harm, disruption of life, effect on family members, damaged physician-patient relationship, and financial expense. Few clinicians initiated discussion of the problematic events. Most patients did not formally report their concerns.
Conclusion
Cancer patients who believe they experienced a preventable, harmful event during their cancer diagnosis or care often do not formally report their concerns. Systems are needed to encourage patients to report such events and to help physicians and health care systems respond effectively.
doi:10.1200/JCO.2011.38.1384
PMCID: PMC3383179  PMID: 22508828
5.  Retention of People Living with HIV/AIDS in Oral Health Care 
Public Health Reports  2012;127(Suppl 2):45-54.
Objective
We identified factors associated with retention in oral health care for people living with HIV/AIDS (PLWHA) and the impact of care retention on oral health-related outcomes.
Methods
We collected interview, laboratory value, clinic visit, and service utilization data from 1,237 HIV-positive patients entering dental care from May 2007 to August 2009, with at least an 18-month observation period. Retention in care was defined as two or more dental visits at least 12 months apart. We conducted multivariate regression using generalized estimating equations to explore factors associated with retention in care.
Results
In multivariate analysis, patients who received oral health education were 5.91 times as likely (95% confidence interval 3.73, 9.39) as those who did not receive this education to be retained in oral health care. Other factors associated with care retention included older age, taking antiretroviral medications, better physical health status, and having had a dental visit in the past two years. Patients retained in care were more likely to complete their treatment plans and attend a recall visit. Those retained in care experienced fewer oral health symptoms and less pain, and better overall health of teeth and gums.
Conclusions
Retention in oral health care was associated with positive oral health outcomes for this sample of PLWHA. The strongest predictor of retention was the receipt of oral health education, suggesting that training in oral health education is an important factor when considering competencies for new dental professionals, and that patient education is central to the development of dental homes, which are designed to engage and retain people in oral health care over the long term.
PMCID: PMC3314392  PMID: 22547876
6.  A New Approach to Ensuring Oral Health Care for People Living With HIV/AIDS: The Dental Case Manager 
Introduction
The American Dental Association has identified several barriers to adequate dental care for vulnerable populations, including appropriate case management. The objective of this study was to examine the perceptions, attitudes, and beliefs of dental patients living with HIV/AIDS on the role and value of the dental case manager (DCM) and the effect of DCM services on their oral or overall health.
Methods
We used a qualitative descriptive study design and focus groups. Twenty-five people who had received DCM services on Cape Cod, Massachusetts, attended 1 of 5 focus groups in 2009 and 2010. Digital recordings of the groups were transcribed verbatim. Textual data were categorized using directed qualitative content analysis techniques. We identified major themes and representative quotes.
Results
The following themes emerged from discussions on the DCM’s role: being available, knowledgeable about clients and insurance, and empathetic; increasing access; and providing comfort. Most participants credited their oral and overall health improvements to the DCM. All participants believed that the DCM was a valuable addition to the clinic and noted that other at-risk populations, including the elderly and developmentally disabled, likely would benefit from working with a DCM.
Conclusion
The addition of a DCM facilitated access to dental care among this sample of people living with HIV/AIDS, providing them with an advocate and resulting in self-reported improvements to oral and overall health.
doi:10.5888/pcd9.110297
PMCID: PMC3499982  PMID: 23098645
7.  Vulnerability-Based Spatial Sampling Stratification for the National Children’s Study, Worcester County, Massachusetts: Capturing Health-Relevant Environmental and Sociodemographic Variability 
Environmental Health Perspectives  2010;118(9):1318-1325.
Background
The National Children’s Study is the most ambitious study ever attempted in the United States to assess how environmental factors impact child health and development. It aims to follow 100,000 children from gestation until 21 years of age. Success requires breaking new interdisciplinary ground, starting with how to select the sample of > 1,000 children in each of 105 study sites; no standardized protocol exists for stratification of the target population by factoring in the diverse environments it inhabits. Worcester County, Massachusetts, like other sites, stratifies according to local conditions and local knowledge, subject to probability sampling rules.
Objectives
We answer the following questions: How do we divide Worcester County into viable strata that represent its health-relevant environmental and sociodemographic heterogeneity, subject to sampling rules? What potential does our approach have to inform stratification at other sites?
Results
We developed a multivariable, vulnerability-based method for spatial sampling consisting of two descriptive indices: a hazards/stressors exposure index (comprising three proxy variables), and an adaptive capacity/sociodemographic character index (five variables). Multivariable, health-relevant stratification at the start of the study may improve detection power for environment–child health associations down the line. Eighteen strata capture countywide heterogeneity in the indices and have optimal relative homogeneity within each. They achieve comparable expected birth counts and conform to local concepts of space.
Conclusion
The approach offers moderate to high potential to inform other sites, limited by intersite differences in data availability, geodemographics, and technical capacity. Energetic community engagement from the start promotes local stratification coherence, plus vital researcher–community trust and co-ownership for sustainability.
doi:10.1289/ehp.0901315
PMCID: PMC2944096  PMID: 20211802
environmental health; GIS; National Children’s Study; stratified sampling; vulnerability
8.  Lessons Learned From a Collaborative to Improve Care for Patients With Diabetes in 17 Community Health Centers, Massachusetts, 2006 
Preventing Chronic Disease  2010;7(4):A83.
Introduction
In 2006, the Massachusetts League of Community Health Centers convened a collaborative to systematically improve health care delivery for patients with diabetes in 17 community health centers. Our goal was to identify facilitators of and barriers to success reported by teams that participated in this collaborative.
Methods
The collaborative's activities lasted 13 months. At their conclusion, we interviewed participating team members. We asked about their teams' successes, challenges, and take-home messages for future collaborative efforts. We organized their responses into common themes by using the Chronic Care Model as a framework.
Results
Themes that emerged as facilitators of success included shifting clinic focus to more actively involve patients and to promote their self-management; improving the understanding and implementation of professional guidelines; and expanding staff roles to accommodate these goals. Patient registries were perceived as beneficial but lacking adequate technical support. Other barriers were staffing and time constraints.
Conclusions
Cooperative efforts to improve health care delivery for people with diabetes may benefit from educating the health care team about guidelines, establishing a stronger role for the patient as part of the health care team, and providing adequate technical instruction and support for the use of clinical databases.
PMCID: PMC2901581  PMID: 20550841

Results 1-8 (8)