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.

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.

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.

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.