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BACKGROUND: The importance of patient-centered measurement in cancer care has led to recognition of the potential for caregiver-reported outcomes to improve caregiver, patient and healthcare system outcomes. Yet, there is limited evidence to inform caregiver-reported outcome implementation. Our purpose was to generate evidence to inform the meaningful and constructive integration of caregiver-reported outcomes into cancer care to benefit caregivers, including exploration of the question of the extent to which these assessments should be shared with patients. We focused on caregivers of patients with colorectal cancer (CRC) because CRC is common, and associated caregiving can be complex. RESULTS: From our Interpretive Description analysis of qualitative interview data from 78 participants (25 caregivers, 37 patients, and 16 healthcare providers [HCPs]), we identified contrasting perspectives about the sharing of caregiver-reported outcome assessments with patients with CRC. Those who preferred open communication with both the patient and caregiver present considered this essential for supporting the caregiver. The participants who preferred private communication without the patient, cited concern about caregiver- and patient-burden and guilt. Recognizing these perspectives, HCPs described strategies used to navigate sensitivities inherent in preferences for open versus private communication. CONCLUSIONS: The integration of caregiver-reported outcomes into cancer care will require careful consideration of caregiver and patient preferences regarding the communication of caregiver assessments to prevent additional burden.
RESUMO
BACKGROUND: There is increased acknowledgment of the importance of knowledge translation (KT) in the role of graduate-prepared healthcare practitioners, such as nurses, as change agents in the mobilization of evidence-based knowledge. The offering of flexible educational programming online and hybrid course delivery in higher education is a response to insufficient didactic methods for providing graduate students with the competencies to facilitate KT. AIMS: To describe the development, implementation, and evaluation of a cohort-based, online, innovative KT curriculum using a theoretical approach to KT called the Knowledge-As-Action Framework, which focuses on the knower, knowledge, and context as being inseparable. This process strategically engages with stakeholders to link practice concerns with existing realities, thus providing the best available knowledge to inform KT action in complex healthcare contexts. METHODS: The Model of Evidence-Informed, Context-Relevant, Unified Curriculum Development in Nursing Education guided the cohort-based online KT course process. The development, implementation, and evaluation involved (a) an environmental scan, (b) a literature review, (c) faculty development, (d) curriculum design of two 10-week courses, and (e) a summation of the concurrent participatory evaluation of the two courses, including faculty and student responses. The Knowledge-As-Action Framework is comprised of six interrelated dimensions as part of a "kite" metaphor, with the underlying premise that if any one of the dimensions results in an imbalance, the KT process may be grounded. RESULTS: Evaluation revealed (a) intentionality of the core processes of curriculum work; (b) effectiveness of indicators for evaluating the KT courses; (c) leadership should be added as a learning domain for KT; (d) the Knowledge-As-Action Framework provided an integrated, philosophical, and evidence-based approach to KT; (e) cohort model facilitated a community of inquiry; and (f) the formalized structured approach of the courses with ongoing supervision and mentoring allowed for timely completion. LINKING EVIDENCE TO ACTION: Teaching and learning in an online cohort model created a community of inquiry and facilitated experiential learning. The active engagement of students with their practice-based stakeholders promoted change in clinical settings and enhanced students' professional development to lead change.
Assuntos
Currículo/tendências , Educação a Distância/métodos , Educação de Pós-Graduação em Enfermagem/métodos , Pesquisa Translacional Biomédica/instrumentação , Pesquisa Translacional Biomédica/métodos , HumanosRESUMO
BACKGROUND: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery. OBJECTIVE: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada. METHODS: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis. RESULTS: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being. CONCLUSION: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care. IMPLICATIONS FOR PRACTICE: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient-family-caregiver dyad needs to be considered as the unit of care.