Sharing in care: engaging care partners in the care and communication of breast cancer patients.
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ABSTRACT:
SUBMITTER: Wolff JL
PROVIDER: S-EPMC6640103 | biostudies-literature | 2019 Aug
REPOSITORIES: biostudies-literature
Publications
Sharing in care: engaging care partners in the care and communication of breast cancer patients.
Wolff Jennifer L JL Aufill Jennifer J Echavarria Diane D Heughan JaAlah-Ai JA Lee Kimberley T KT Connolly Roisin M RM Fetting John H JH Jelovac Danijela D Papathakis Katie K Riley Carol C Stearns Vered V Thorner Elissa E Zafman Nelli N Levy Howard P HP Dy Sydney M SM Wolff Antonio C AC
Breast cancer research and treatment 20190604 1
<h4>Purpose</h4>Family is often overlooked in cancer care. We developed a patient-family agenda setting intervention to engage family in cancer care communication.<h4>Methods</h4>We conducted a pilot randomized controlled trial (NCT03283553) of patients on active treatment for breast cancer and their family "care partner." Intervention dyads (n = 69) completed a self-administered checklist to clarify care partner roles, establish a shared visit agenda, and facilitate MyChart patient portal acces ...[more]
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| S-EPMC6472453 | biostudies-literature
Project description:ObjectiveTo test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands.MethodsIn this cross-sectional validation study, partners of patients with breast cancer were invited to complete a survey on the patient's cancer and the caregiver's level of unmet needs (SCNS-P&C45-D), psychological distress (HADS) and burden (EDIZ).Results43% of the invited informal caregivers responded (n?=?302). Flooring effects were identified for three items of the SCNS-P&C45-D,which were then deleted from further analysis. The original factor structure and loading pattern of the SCNS-P&C45-D was not replicated. Internal consistency of the SCNS-P&C45-D and all subscales' (emotional and relational needs, health care and illness related needs, practical needs, work and social needs) Cronbach's alpha coefficients exceeded 0.80, the entire measure's Cronbach's alpha is 0.98. Most SCNS-P&C45-D subscales showed moderate correlations with distress and burden from informal care which was in line with expectations based on validity. The domain 'Work and Social needs' showed a high correlation with burden from informal care. Participants reported significantly more or higher unmet needs if they were younger (25.5% vs. 20.3% in older patients, p?=?0.004), if diagnosis was less than 1?year ago in one subscale (Health Care and Illness related needs; 19.5% and 18%, p?=?0.029, and the total SCNS-P&C45-D; 23.2% vs. 22.4%, p?=?0.018).ConclusionsThe SCNS-P&C45-D is able to identify those partners of patients with breast cancer in need and those who are not.
| S-EPMC6329686 | biostudies-literature
Project description:We examined the effects of a communication intervention to engage family care partners on patient portal (MyChart) use, illness understanding, satisfaction with cancer care, and symptoms of anxiety in a single-blind randomized trial of patients in treatment for breast cancer. Patient-family dyads were recruited and randomly assigned a self-administered checklist to clarify the care partner role, establish a shared visit agenda, and facilitate MyChart access (n = 63) or usual care (n = 55). Interviews administered at baseline, 3, 9 (primary endpoint), and 12 months assessed anxiety (GAD-2), mean FAMCARE satisfaction, and complete illness understanding (4 of 4 items correct). Time-stamped electronic interactions measured MyChart use. By 9 months, more intervention than control care partners registered for MyChart (77.8 % vs 1.8%; p < 0.001) and logged into the patient's account (61.2% vs 0% of those registered; p < 0.001), but few sent messages to clinicians (6.1% vs 0%; p = 0.247). More intervention than control patients viewed clinical notes (60.3% vs 32.7%; p = 0.003). No pre-post group differences in patient or care partner symptoms of anxiety, satisfaction, or complete illness understanding were found. Intervention patients whose care partners logged into MyChart were more likely to have complete illness understanding at 9 months (changed 70.0% to 80.0% vs 69.7% to 54.6%; p = 0.03); symptoms of anxiety were numerically lower (16.7% to 6.7% vs 15.2% to 15.2%; p = 0.24) and satisfaction numerically higher (15.8-16.2 vs 18.0-17.4; p = 0.25). A brief, scalable communication intervention led to greater care partner MyChart use and increased illness understanding among patients with more engaged care partners (NCT03283553).
| S-EPMC7881185 | biostudies-literature
Project description:To evaluate the relevance, performance and potential usefulness of the Patient Assessment of cancer Communication Experiences (PACE) items.Items focusing on specific communication goals related to exchanging information, fostering healing relationships, responding to emotions, making decisions, enabling self-management, and managing uncertainty were tested via a retrospective, cross-sectional survey of adults who had been diagnosed with cancer. Analyses examined response frequencies, inter-item correlations, and coefficient alpha.A total of 366 adults were included in the analyses. Relatively few selected Does Not Apply, suggesting that items tap relevant communication experiences. Ratings of whether specific communication goals were achieved were strongly correlated with overall ratings of communication, suggesting item content reflects important aspects of communication. Coefficient alpha was ?.90 for each item set, indicating excellent reliability. Variations in the percentage of respondents selecting the most positive response across items suggest results can identify strengths and weaknesses.The PACE items tap relevant, important aspects of communication during cancer care, and may be useful to cancer care teams desiring detailed feedback.The PACE is a new tool for eliciting patients' perspectives on communication during cancer care. It is freely available online for practitioners, researchers and others.
| S-EPMC4931971 | biostudies-literature
Project description:Coordination of services used by palliative care patients across care contexts is essential in providing patient centred care. In Lothian, Edinburgh, a baseline audit in 2008 of patients known to all four specialist palliative care teams revealed only 49% had information available to out of hours (OOH) general practitioners (GPs). This highlighted the poor handover and sharing of information, which are essential for providing quality care for palliative patients in accordance with their wishes, and for reducing inappropriate hospital admissions. A number of quality improvement measures have been introduced, some nationally in Scotland, such as the roll out of Electronic Palliative Care Summaries (ePCS) - an electronic register containing up to date information including patient wishes and latest treatment decisions. In addition there have been changes to the GP Quality Outcomes Framework encouraging the use of electronic records. Locally, at Marie Curie Hospice, drivers were implemented including hosting GP education evenings promoting ePCS use, alteration of hospice discharge letter format to complement ePCS completion, in addition to offering specialist nurse support and presence at GP practice palliative care register meetings. A re-audit in 2012 revealed that 75% of specialist palliative care patients had electronic information available to OOH services, and in 2013, 71% of patients. This represents a significant improvement in electronic information sharing across care contexts. Building on the progress of ePCS, a new Electronic Key Information Summary is currently being rolled out across Scotland. This quality improvement report reflects on the positive measures taken to address the important clinical need of effective electronic handover for specialist palliative care patients in Lothian. Furthermore, it highlights the ongoing requirement to continue to improve the quality and availability of electronically shared information for every patient known to palliative care services across care contexts.
| S-EPMC4645862 | biostudies-other
Project description:BackgroundAdvance care planning (ACP) is a process that supports adults in understanding and sharing their personal values, life goals, and preferences regarding future medical care. We examined the current status of ACP and end-of-life (EOL) communication between oncologists and patients with metastatic breast cancer.Materials and methodsWe conducted a survey among 41 institutions that specialize in oncology by using an online tool in October 2019. Participants (118 physicians) from 38 institutions completed a 39-item questionnaire that measured facility type and function; physicians' background and clinical approach, education about EOL communication, and understanding about ACP; and the current situation of ACP and EOL discussions.ResultsNinety-eight responses concerning physicians' engagement in ACP with patients were obtained. Seventy-one (72%) answered that they had engaged in ACP. Among these, 23 (33%) physicians used a structured format to facilitate the conversation in their institutions, and only 6 (8%) settled triggers or sentinel events for the initiation of ACP. In the multivariable analysis, only the opportunity to learn communication skills was associated with physicians' engagement with ACP (odds ratio: 2.8, 95% confidence interval: 1.1-7.0). The frequency and timing of communication about ACP and EOL care with patients substantially varied among the oncologists. Communication about patients' life expectancy was less frequent compared with other topics.ConclusionThe opportunity to improve EOL communication skills promoted physicians' engagement with ACP among patients with metastatic/advanced breast cancer. However, there were still substantial variabilities in the method, frequency, and timing of ACP and EOL communication among the oncologists.Implications for practiceThis study found that the opportunity to improve end-of-life (EOL) communication skills promoted physicians' engagement in advance care planning (ACP) among patients with metastatic/advanced breast cancer. All oncologists who treat said patients are encouraged to participate in effective education programs concerning EOL communication skills. In clinical practice, there are substantial variabilities in the method, frequency, and timing of ACP and EOL communication among oncologists. As recommended in several clinical guidelines, the authors suggest a system that identifies patients who require conversations about their care goals, a structured format to facilitate the conversations, and continuous measurement for improving EOL care and treatment.
| S-EPMC8018302 | biostudies-literature
Project description:BackgroundTo identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services.MethodsWe searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients' experiences of being engaged.ResultsForty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign-discrete products largely derived from low-level engagement (consultative unidirectional feedback)-whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients' experiences of the engagement process (n?=?12; 25%). While most experiences were positive-increased self-esteem, feeling empowered, or independent-some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made.ConclusionsPatient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients' experiences of the engagement process and whether these outcomes translate into improved quality of care.RegistrationN/A (data extraction completed prior to registration on PROSPERO).
| S-EPMC6060529 | biostudies-literature
Project description:We study how communication affects cooperation in an experimental public goods environment with punishment and counter-punishment opportunities. Participants interacted over 30 rounds in fixed groups with fixed identifiers that allowed them to trace other group members' behavior over time. The two dimensions of communication we study are asking for a specific contribution level and having to express oneself when choosing to counter-punish. We conduct four experimental treatments, all involving a contribution stage, a punishment stage, and a counter-punishment stage in each round. In the first treatment communication is not possible at any of the stages. The second treatment allows participants to ask for a contribution level at the punishment stage and in the third treatment participants are required to send a message if they decide to counter-punish. The fourth combines the two communication channels of the second and third treatments. We find that the three treatments involving communication at any of the two relevant stages lead to significantly higher contributions than the baseline treatment. We find no difference between the three treatments with communication. We also relate our results to previous results from treatments without counter-punishment opportunities and do not find that the presence of counter-punishment leads to lower cooperation level. The overall pattern of results shows that given fixed identifiers the key factor is the presence of communication. Whenever communication is possible contributions and earnings are higher than when it is not, regardless of counter-punishment opportunities.
| S-EPMC4821197 | biostudies-literature
Project description:To advocate for patients to be more actively involved with the healthcare services they receive, particularly patients living with chronic illness, the Faculty of Medicine of the University of Montreal and its affiliated hospitals developed the Patients as Partners concept where the patient is considered a full-fledged partner of the health care delivery team and the patient's experiential knowledge is recognized. This study aims to show how patients view their engagement with healthcare professionals regarding their direct care. Using theoretical sampling, 16 semi-structured interviews were conducted with patients with chronic illness who were familiar with the concept of Patients as Partners. Data analysis followed a constructivist grounded theory approach. Patients describe themselves as proactively engaging in three types of practice, regardless of health professionals' openness to their role as partners. The first is a process of continuous learning that allows them to acquire experiential knowledge about their health, as well as scientific information and technical know-how. The second involves their assessment of the healthcare they receive, in terms of its quality and how it aligns with their personal preferences. It includes their assessment of the quality of their relationship with the health professional and of the latter's scientific knowledge and technical know-how. The third type, adaptation practices, builds on patients' learning and assessments to compensate for and adapt to what has been perceived as optimal or non-optimal health or healthcare circumstances. Patients appear to play a more active and less docile role in their own direct care than suggested so far in the literature, regardless of the degree of reciprocity of the partnership or the degree to which the health professional seeks to encourage patient engagement.
| S-EPMC4391791 | biostudies-other
Project description:BackgroundDevelopment Assistance for Health (DAH) represents an important source of health financing in many low and middle-income countries. However, there are few accounts on how priorities funded through DAH are integrated with district health priorities. This study is aimed at understanding the operational challenges of engaging development partners in district health planning in Tanzania.MethodsThis explanatory mixed-methods study was conducted in Kinondoni and Bahi districts, representing urban and rural settings of the country. Data collection took place between November and December 2015. The quantitative tools (mapping checklist, district questionnaire and Development partners (DPs) questionnaire) mapped the DPs and their activities and gauged the strength of DP engagement in district health planning. The qualitative tool, a semi-structured in-depth interview guide administered to 20 key informants (the council health planning team members and the development partners) explained the barriers and facilitators of engagement. Descriptive and thematic analysis was utilized for quantitative and qualitative data analysis respectively.ResultsEighty-six per cent (85%) of the development partners delivering aid in the studied districts were Non-Governmental Organizations. Twenty percent (20%) of the interventions were HIV/AIDS interventions. We found that only four (4) representing 25 % (25%) DPs had an MOU with the District Council, 56 % (56%) had submitted their plans in writing to be integrated into the 2014/15 CCHP. Six (6) representing 38 % (38%) respondents had received at least one document (guidelines, policies and other planning tools) from the district for them to use in developing their organization activity plans. Eighty-seven point 5 % (87.5%) from Bahi had partial or substantial participation, in the planning process while sixty-two point 5 % (62.5%) from Kinondoni had not participated at all (zero participation). The operational challenges to engagements included differences in planning cycles between the government and donors, uncertainties in funding from the prime donors, lack of transparency, limited skills of district planning teams, technical practicalities on planning tools and processes, inadequate knowledge on planning guidelines among DPs and, poor donor coordination at the district level.ConclusionsWe found low engagement of Development Partners in planning. To be resolved are operational challenges related to differences in planning cycles, articulations and communication of local priorities, donor coordination, and technical skills on planning and stakeholder engagement.
| S-EPMC8800550 | biostudies-literature