African Americans' and Hispanics' information needs about cancer care.
ABSTRACT: Few studies have reported on African American and Hispanic (AA and H) populations' informational needs when seeking cancer care at an institution that offers clinical trials. Moffitt Cancer Center (MCC) sought to identify and examine the decision making process, the perceptions, and the preferred channels of communication about cancer care services for AA and H communities in order to develop a list of marketing recommendations. Five focus groups (N?=?45) consisting of two AA and three H were conducted in four counties of the MCC catchment area in Tampa, FL. Participants were asked about their perceptions, knowledge, attitudes, and beliefs about cancer care and MCC. Focus groups were audio-recorded and verbatim transcripts were analyzed using content analysis. Similarities in responses were found between AA and H participants. Participants received general health and cancer information from media sources and word of mouth and preferred to hear patient testimonials. There were concerns about costs, insurance coverage, and the actual geographic location of the cancer center. In general, H participants were not opposed to participating in cancer clinical trials/research, whereas, AA participants were more hesitant. A majority of participants highly favored an institution that offered standard care and clinical trials. AA and H participants shared similar concerns and preferences in communication channels, but each group had specific informational needs. The perceptions and preferences of AA and H must be explored in order to successfully and efficiently increase cancer clinical trial participation.
Project description:BACKGROUND:High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care. METHOD:An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed. RESULTS:A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test). CONCLUSION:Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL.
Project description:OBJECTIVE:To systematically map and synthesise the literature on older adults' perceptions and experiences of integrated care. SETTING:Various healthcare settings, including primary care, hospitals, allied health practices and emergency departments. PARTICIPANTS:Adults aged ?60 years. INTERVENTIONS:Integrated (or similarly coordinated) healthcare. PRIMARY AND SECONDARY OUTCOME MEASURES:Using scoping review methodology, four electronic databases (EMBASE, CINAHL, PubMed and ProQuest Dissertation and Theses) and the grey literature (Open Grey and Google Scholar) were searched to identify studies reporting on older adults' experiences of integrated care. Studies reporting on empirical, interpretive and critical research using any type of methodology were included. Four independent reviewers performed study selection, data extraction and analysis. RESULTS:The initial search retrieved 436 articles, of which 30 were included in this review. Patients expressed a desire for continuity, both in terms of care relationships and management, seamless transitions between care services and/or settings, and coordinated care that delivers quick access, effective treatment, self-care support, respect for patient preferences, and involves carers and families. CONCLUSIONS:Participants across the studies desired accessible, efficient and coordinated care that caters to their needs and preferences, while keeping in mind their rights and safety. This review highlights the salience of the relational, informational and organisational aspects of care from an older person's perspective. Findings are transferable and could be applied in various healthcare settings to derive patient-centred success measures that reflect the aspects of integrated care that are deemed important to older adults and their supporters.
Project description:Randomized controlled trials, especially the Early Palliative Care Study (Temel et al., 2010), have shown that early outpatient palliative cancer care can improve quality of life for patients with advanced cancer or serious symptoms. However, fear and misconceptions drive avoidance of palliative care. Drawing from an empowerment perspective, we examined whether educating patients about evidence from the Early Palliative Care Study would increase preferences for palliative care.A sample of 598 patients with prostate, breast, lung, colon/rectal, skin, and other cancer diagnoses completed an Internet-mediated experiment using a between-group prepost design. Intervention participants received a summary of the Early Palliative Care Study; controls received no intervention. Participants completed baseline and posttest assessments of preferences of palliative care. Analyses controlled for age, gender, education, cancer type, presence of metastases, time since diagnosis, and baseline preferences.As hypothesized, the intervention had a favorable impact on participants' preferences for outpatient palliative cancer care relative to controls (d = 1.01, p < .001), while controlling for covariates. Intervention participants came to view palliative care as more efficacious (d = 0.79, p < .001) and less scary (d = 0.60, p < .001) and exhibited stronger behavioral intentions to utilize outpatient palliative care if referred (d = 0.60, p < .001). Findings were comparable in patients with metastatic disease, those with less education, and those experiencing financial strain.Educating patients about the Early Palliative Care Study increases preferences for early outpatient palliative care. This research has implications for future studies aimed at improving quality of life in cancer by increasing palliative care utilization. (PsycINFO Database Record
Project description:Few empirical studies have been conducted on the continuity of rehabilitation services, despite the fact that it may affect clinical outcomes, patient satisfaction, the perception of quality, and safety.The aim of this study was to explore experiences and perceptions of inpatients receiving physical rehabilitation in an acute care hospital and how these experiences may have led to perceived gaps in the continuity of rehabilitation care.Using qualitative research methods, fifteen semi-structured interviews were conducted with patients who received physical rehabilitation during hospital stay in an acute care hospital in Murcia, Spain. Interviews were transcribed verbatim, analyzed, and grouped into predetermined and emergent codes.Patients described three main themes in continuity of care: informational, management, and relational continuity. Several factors were described as influencing the perceived gaps in these three types of continuity. Informational continuity was influenced by the transfer of information among care providers. Relational continuity was influenced by patient-therapist relations and consistency on the part of the provider. Management continuity was influenced by consistency of care between providers and the involvement of patients in their own care.The participants in this study identified several gaps in three types of continuity of care (informational, management, and relational). Inpatients often perceive their experiences of rehabilitation as being disconnected or incoherent over time.
Project description:Continuity of care can bring a wide range of benefits to consumers, providers and health care systems. This study aimed to understand the relationship preferences of primary care patients and their associations with patient experience of continuity of care.A questionnaire survey was conducted on 700 patients who sought medical care from a community health organisation in Beijing. The survey contained four items examining the relationship preferences of the respondents, and a modified Questionnaire of Continuity between Care Levels (CCAENA) measuring patient experience of continuity of care based on a three dimensional (relational, informational and managerial) model. The associations between the relationship preferences and the experience of respondents in continuity of care was tested using a linear regression model controlling for age, sex, education, medical insurance, personal income and servicing facilities.The respondents experienced relatively lower levels of informational and managerial continuity compared with relational continuity of care. More than 80% of respondents preferred free choice and a continuing relationship with doctors, compared with 59% who endorsed community facility control over hospital appointments. A preference for a continuing relationship with doctors was associated with all aspects of continuity of care. A preference in favour of community facility control over hospital appointments was a strong predictor of managerial continuity (??=?0.333, p?<?0.001) and informational continuity (??=?0.256, p?<?0.001). Patient preference for free choice of doctors was positively associated with relational continuity with specialists (p?<?0.001), but not with primary care providers (p > 0.08). Perceived importance of information exchange was associated with relational and managerial continuity (p?<?0.05), but not with informational continuity (p?=?0.34).Patients prefer a high level of freedom of choice and sustained individual relationship with doctors. Relationship preferences of patients are associated with their experience of continuity of care. But patient strong preference for free choice of doctors is not aligned with relational continuity with primary care, a desirable feature of cost-effective healthcare systems.
Project description:Recruitment challenges hinder behavioral intervention research in cancer survivors. The purpose was to examine the reasons for declining and intervention preferences of study-eligible breast cancer survivors declining a trial of a four-session couple-based Intimacy Enhancement intervention (refusers) and explore whether refusers differed from participants on key characteristics. Partnered, post-treatment breast cancer survivors reporting sexual concerns who were eligible for but declined participation in the intervention trial were approached to complete a standardized 5-min telephone survey assessing reasons for declining and support preferences. Demographic, clinical, and sexual concerns information were collected during screening. Trial participants and refusers were compared on key variables of age, race, hormone therapy use, time since treatment, level of sexual concerns, and recruitment method using t-tests or chi-square tests. Among the 31 women who declined the trial and completed the survey, the most common reasons for declining were time commitment (74%) and partner noninterest (32%). Most (61%) reported that the telephone format played little to no role in their refusal. Eighty-one percent wanted their partners involved in a program addressing sexual concerns. The two most preferred resources were informational websites (45%) and meeting with a professional (26%). Trial participants and refusers did not differ on any key factors examined. Developing intimacy interventions that are very brief, partner-optional, or that use stepped care may bolster uptake. The methods used to examine study-eligible candidates' needs and preferences could be employed in other health populations, thus having broader implications for research design.
Project description:Attention to patients' religious and spiritual needs is included in national guidelines for quality end-of-life care, but little data exist to guide spiritual care.The Religion and Spirituality in Cancer Care Study is a multi-institution, quantitative-qualitative study of 75 patients with advanced cancer and 339 cancer physicians and nurses. Patients underwent semistructured interviews, and care providers completed a Web-based survey exploring their perspectives on the routine provision of spiritual care by physicians and nurses. Theme extraction was performed following triangulated procedures of interdisciplinary analysis. Multivariable ordinal logistic regression models assessed relationships between participants' characteristics and attitudes toward spiritual care.The majority of patients (77.9%), physicians (71.6%), and nurses (85.1%) believed that routine spiritual care would have a positive impact on patients. Only 25% of patients had previously received spiritual care. Among patients, prior spiritual care (adjusted odds ratio [AOR], 14.65; 95% CI, 1.51 to 142.23), increasing education (AOR, 1.26; 95% CI, 1.06 to 1.49), and religious coping (AOR, 4.79; 95% CI, 1.40 to 16.42) were associated with favorable perceptions of spiritual care. Physicians held more negative perceptions of spiritual care than patients (P < .001) and nurses (P = .008). Qualitative analysis identified benefits of spiritual care, including supporting patients' emotional well-being and strengthening patient-provider relationships. Objections to spiritual care frequently related to professional role conflicts. Participants described ideal spiritual care to be individualized, voluntary, inclusive of chaplains/clergy, and based on assessing and supporting patient spirituality.Most patients with advanced cancer, oncologists, and oncology nurses value spiritual care. Themes described provide an empirical basis for engaging spiritual issues within clinical care.
Project description:Rationale & Objective:Older patients with advanced chronic kidney disease (CKD) use intensive care at the end of life and die in a hospital more frequently than patients with cancer or heart disease. Advance care planning (ACP) can help align treatment with patient preferences and improve patient-centered care, yet ACP quality and experiences among older patients with CKD and their care partners remain incompletely understood, particularly among the non-dialysis-dependent population. Study Design:In-person interviewer-administered surveys of patients 70 years and older with non-dialysis-dependent CKD stage 4 or 5 and their self-identified care partners. Setting & Participants:42 participants (31 patients, 11 care partners) at 2 clinical sites in greater Boston. Outcomes:Completion of advance directives and self-reported perceptions, preferences, and experiences of ACP. Analytical Approach:Descriptive analysis of patient and care partner surveys. McNemar test analysis to compare patient and care partner responses. Results:Most patients had written advance directives (64%) and surrogate decision makers (81%). Although patients reported positive perceptions and high trust in their clinicians' judgment, few (16%) had actually discussed preferences for life-sustaining treatment with their nephrologists. Few ACP discussions included components reflective of high-quality ACP: 16% of patients had been asked about their values concerning end-of-life care and 7% had discussed issues of decision-making capacity and consent to care should their health decline. When presented with 2 hypothetical scenarios (stroke/heart attack or dementia), nearly all patients and care partners reported a preference for comfort care over delaying death. Care partners were more likely than patients to report that they had experienced discussion components reflective of high-quality ACP with the clinical team. Limitations:Single metropolitan area; most patients did not identify a care partner; nonresponse bias and small sample size. Conclusions:Patients often believed that their clinicians understood their end-of-life wishes despite not having engaged in ACP conversations that would make those wishes known. Improving clinical ACP communication may result in end-of-life treatment that better aligns with patient goals.
Project description:Colorectal cancer (CRC) survivors experience difficulty navigating complex care pathways. Sharing care between GPs and specialist services has been proposed to improve health outcomes in cancer survivors following hospital discharge. Culturally and Linguistically Diverse (CALD) groups are known to have poorer outcomes following cancer treatment but little is known about their perceptions of shared care following surgery for CRC. This study aimed to explore how non-English-speaking and English-speaking patients perceive care to be coordinated amongst various health practitioners.This was a qualitative study using data from face to face semi-structured interviews and one focus group in a culturally diverse area of Sydney with non-English-speaking and English-speaking CRC survivors. Participants were recruited in community settings and were interviewed in English, Spanish or Vietnamese. Interviews were recorded, transcribed, and analysed by researchers fluent in those languages. Data were coded and analysed thematically.Twenty-two CRC survivors participated in the study. Participants from non-English-speaking and English-speaking groups described similar barriers to care, but non-English-speaking participants described additional communication difficulties and perceived discrimination. Non-English-speaking participants relied on family members and bilingual GPs for assistance with communication and care coordination. Factors that influenced the care pathways used by participants and how care was shared between the specialist and GP included patient and practitioner preference, accessibility, complexity of care needs, and requirements for assistance with understanding information and navigating the health system, that were particularly difficult for non-English-speaking CRC survivors.Both non-English-speaking and English-speaking CRC survivors described a blend of specialist-led or GP-led care depending on the complexity of care required, informational needs, and how engaged and accessible they perceived the specialist or GP to be. Findings from this study highlight the role of the bilingual GP in assisting CALD participants to understand information and to navigate their care pathways following CRC surgery.
Project description:This research seeks to verify the value of considering specific perceptions of informational and interpersonal justice over and above employees' global perceptions of interactional justice. In Study 1 (Sample 1: n = 592; Sample 2: n = 384), we examined the underlying structure of workers' perceptions of interactional justice by contrasting first-order and bifactor representations of their ratings. To investigate the true added value of specific informational and interpersonal justice perceptions once global interactional justice perceptions are taken into account, we also considered the relations between these global and specific perceptions and various outcomes. Our findings revealed that workers' perceptions of interactional justice simultaneously reflected a global interactional justice factor and two specific facets (interpersonal and informational justice). In Study 2, we identified employees' latent justice profiles based on their global (interactional justice) and specific (interpersonal and informational justice) levels of interactional justice. Five different interactional justice profiles were identified: low interpersonal, high interpersonal/average informational, high informational, normative, and high interpersonal/low informational. Employees' perceptions of transformational leadership are a significant predictor of profile membership. Finally, the five profiles were significantly associated with anxiety and emotional exhaustion.