Learning to provide humanistic care and support in the context of chronic illness: Insights from the narratives of healthcare professionals in hemato-oncology.

PURPOSE: To document the process by which healthcare professionals (HCPs) support people living with and beyond hematological cancer and detail how they learned from their personal and clinical experience. METHOD: Using a narrative approach, we conducted nine semi-structured interviews with HCPs, including nurses, from a specialized care centre who support patients with hematological cancer. Interviews aimed to capture experiential learning gained from their practice. We performed a hybrid inductive/deductive content analysis on data using a framework based on sociological and educational models of experiential learning. RESULTS: Among healthcare professionals, analysis revealed the need to provide care and support that is 'humane' and adapted to each patient. Learning to provide this type of care proved to be challenging. Over the course of their clinical experience, healthcare professionals learned to adapt the support they provided by straddling a boundary between sympathy and empathy. Learning outcomes were associated with personal-professional development among participants. CONCLUSION: Our findings bring to light an overlooked facet of patient support in the context of cancer care, which is the acquisition of the soft skills required to deliver humanistic care and support. This learning process requires time and involves navigating between the realms of sympathy and empathy. Experiential learning is intertwined with the complexity of the often long-term patient-professional relationship that characterizes hemato-oncology. This unique relationship offers rewards for healthcare professionals on both personal and professional fronts.

"I Want to Help Others Like Me": A Pilot Qualitative Study on Patients' Participation in a Screening for Distress Program.

Screening for distress was implemented in our academic hospital with the engagement of patients as partners. Little is known about how they appreciate such participation. This pilot qualitative study aimed to explore their experience. Six participants completed a semi-structured interview, which was transcribed verbatim. Thematic analysis was performed on the transcripts. Four themes emerged: "opinions about their participation", "working with others", "role of patient partners", and "barriers encountered". Mean global satisfaction reported on a Likert scale reached 8.92 over 10. Our preliminary findings suggest that patients-as-partners appreciated their participation, and also identified barriers that should be explored in future quality improvement (QI) projects.

The Experiential Learning Pathway of Cancer Survivors as They Recover Their Lives Post-Treatment: A Qualitative Study.

For many cancer survivors, post-treatment challenges are predominantly related to their personal and social lives. These challenges are part of an experiential learning process linked to a survivor's identity, their desire to preserve independence, their social roles, and responsibilities along with a return to their normal lives. We used interpretive description to describe the experiential learning process of cancer survivors as they recover post-treatment. Data from five group discussions with 27 participants were combined with data from 9 in-depth individual interviews that examined post-treatment challenges. Through an iterative qualitative analysis, we uncovered 3 experiential learning pathways. Narrative vignettes are used to portray and highlight learning involved in accepting loss, asking for help, and rebuilding authentic social networks. Experiential learning shares recognizable features among individuals identified as milestones. These lead to a greater understanding of how cancer survivors acquire a new sense of self and recover their lives post-treatment.

Chronic Illness Management in Culturally and Linguistically Diverse Patients: Exploring the Needs, Access, and Understanding of Information.

In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients' information needs and provide strategies that go beyond translation.

Learning through the experience of cancer survivorship: differences across age groups.

OBJECTIVE: To identify and describe challenges that contribute to experiential learning among cancer survivors across different age groups. RESEARCH APPROACH: Qualitative collaborative study. PARTICIPANTS: 27 cancer survivors. METHODOLOGICAL APPROACH: Participants were invited to explain the after-cancer challenges they learned from during six focus groups. Five were organized by age-group (15-18, 19-34, 35-44, 45-59, ≥ 60) and a mixed group was held to ensure the co-construction of findings with participants. Inductive content analysis was performed. FINDINGS: While learning to live with a chronic disease, participant's experiential learning appeared through four challenges: Searching for one's identity, Autonomy, Disruption of social roles and responsibilities, Reclaiming one's life. Particular aspects of challenges were identified across ages-groups and life courses. INTERPRETATION: Results indicate that psychosocial and health professionals should be sensitive to the fact that life courses are now diverse and not always associated with biological age. This has the potential to improve care by informing how these challenges affect the experience of cancer survivorship over time.

The effect of culturally-adapted health education interventions among culturally and linguistically diverse (CALD) patients with a chronic illness: A meta-analysis and descriptive systematic review.

OBJECTIVE: To review the effectiveness of health education interventions adapted for culturally and linguistically diverse (CALD) populations with a chronic illness. METHODS: A systematic review and meta-analysis were conducted. Eligible studies were identified across six databases. Data were extracted and intervention effect was summarized using standardized mean difference. If there were insufficient data for meta-analysis, a descriptive summary was included. Modifying effects of intervention format, length, intensity, provider, self-management skills taught, and behavioral change techniques (BCTs) utilized were examined. RESULTS: 58 studies were reviewed and data were extracted for 36 outcomes. Most interventions used multiple modes of delivery and were facilitated by bilingual health care professionals (HCPs). On average, interventions included 5.19 self-management skills and 4.82 BCTs. Interventions were effective in reducing BMI, cholesterol, triglycerides, blood glucose, HbA1C, and depression, and in increasing knowledge. Effectiveness was influenced partly by provider, with HCPs favored over lay providers or paraprofessionals in increasing knowledge; however, the opposite was noted for HbA1c. CONCLUSIONS: Health education interventions are effective among CALD populations, particularly at improving objective, distal outcomes (e.g., anthropometric measures). These interventions may be equally effective in improving proximal patient-reported outcomes (PROs); however, diversity in PROs limited analyses. PRACTICE IMPLICATIONS: Core outcome sets (COS) are needed to further investigate and compare health education intervention effectiveness on PROs.

Engaging patients as partners in cancer care: An innovative strategy to implement screening for distress?

Patient distress is frequently missed in everyday cancer care, yet can be associated with decreased quality of life and satisfaction with care, as well as increased risk for comorbidity and morbidity. Considered as an aspect of a patient-centred approach, screening for distress is now an international standard of practice and constitutes an accreditation criterion for cancer centers in the USA and Canada. Inspired by existing health partnership models, the Centre Hospitalier de l'Université de Montréal's (CHUM) Integrative Cancer Care Center recruited patients to act as partners during the creation and implementation of its screening for distress program. Patient partner roles in the program included becoming a member of a specialized psychosocial oncology team, contributing to a healthcare professional training program and helping to select tools to detect distress. This paper describes why and how the CHUM cancer care centre developed an innovative screening for distress program, using a patient partnership approach, to better meet the needs of patients with cancer.

Strategies Used by Older Patients to Prevent Functional Decline During Hospitalization.

Almost one third of older patients hospitalized for acute care suffer functional decline. Few studies have investigated the point of view of older patients on prevention of this decline. Within the framework of a descriptive qualitative study, the perceptions of 30 hospitalized older adults were collected regarding their personal prevention strategies, the barriers to implementing these, and nursing staff interventions deemed useful. Results show that participants are sensitive to the risk of functional decline and utilize various preventive strategies particularly to maintain their physical abilities, maintain good spirits, keep a clear mind, and foster nutrition and sleep. Their strategies are difficult to implement on account of internal and external barriers. Nursing interventions deemed useful are good relational approach, strong basic care, appropriate assessment, and respect for level of autonomy. The study underscores that older hospitalized patients are applying strategies to prevent functional decline, but some nursing interventions may thwart their efforts.

Information for patients with or at risk of cancer-related lymphedema.

The Internet has great potential to provide information to patients with or at risk of developing cancer-related lymphedema (CRL), a complication of cancer treatment. To evaluate Web site structure (e.g., accreditation, design) and content (e.g., validity) for available Web sites on CRL, lymphedema, lymphoedema, cancer, and oncology were used with 10 search engines (five French and five English). The first page of each Web site was examined and the content was identified and classified using the evaluation model of the Science Panel on Interactive Communication and Health. The search strategy yielded 120 Web sites. Using inclusion and exclusion criteria, 19 Web sites were selected. The authors found that 79% of the Web sites focused exclusively on CRL and 74% were in English. Although information about each site's sponsor, goal, and target audience was readily available, content material was incomplete and evaluation of Web site impact and effectiveness was nonexistent. This review suggests that Web sites about CRL vary greatly in terms of structure and content.

Different roads, same destination: launching regional training centres.

The four Regional Training Centres (RTCs) founded by the Canadian Health Services Research Foundation and the Canadian Institutes of Health Research have used their regional context and resources to develop an innovative approach to reach their common goal of increasing capacity in applied health and nursing services research in Canada. As this overview explains, experiential learning features prominently in all four RTCs with the involvement of healthcare decision-makers and organizations. An interdisciplinary conceptual and methodological approach has been emphasized, resulting in both a regional and a national network of faculty, researchers, healthcare decision-makers and graduate students who are committed to the field of applied health and nursing services research. Faculty, decision-makers and students have gained a deeper understanding of how to achieve knowledge translation and exchange within the context of applied health and nursing services research to promote evidence-informed decision-making.

Labeled CO(2) production and oxidative vs nonoxidative disposal of labeled carbohydrate administered at rest.

Carbon isotopes (*C) have been extensively used in man to describe oxidative vs nonoxidative disposal of an exogenous load of labeled carbohydrate (*C-CHO) at rest in various experimental situations. It is hypothesized that V*CO(2) reflects *C-CHO oxidation. However, when glycogen is synthesized through the indirect pathway (which is responsible for approximately 50% of glycogen storage), *C could be lost, diluted, and exchanged in the pyruvate-lactate pool, in the pool of tricarboxylic acid cycle intermediates, as well as at the entrance of the tricarboxylic acid cycle, and along the pathway of gluconeogenesis. This could result in a lower *C/C in the glycogen stored than in the CHO administered, in an increased production of *CO(2), and, respectively, in an overestimation and an underestimation of the oxidative and nonoxidative disposal of the CHO load. Results from the present experiment offer a support to this hypothesis. Over a 10-hour period after ingestion of a (13)C-pasta meal (313+/-10 g dry mass or 258+/-8 g of glucose) in 12 healthy subjects (6 men and 6 women), exogenous CHO oxidation computed from V(13)CO(2) (recovery factor, 0.54) significantly exceeded total CHO oxidation computed by indirect respiratory calorimetry corrected for urea excretion: 154.2+/-2.6 vs 133.5+/-3.2 g. In an additional study conducted in rats, (13)C/(12)C in glycogen stores was significantly approximately 50% lower than in the (13)C-CHO ingested, over a wide range of enrichment. These results suggest that because of dilution, loss, and exchange of *C in the indirect pathway of glycogen synthesis, the oxidative vs nonoxidative disposal of exogenous *C-CHO cannot be accurately tracked from V*CO(2).