Design and implementation of a prototype radiotherapy menu in a patient portal.

PURPOSE: Radiotherapy patients often face undue anxiety due to misconceptions about radiation and their inability to visualize their upcoming treatments. Access to their personal treatment plans is one way in which pre-treatment anxiety may be reduced. But radiotherapy data are quite complex, requiring specialized software for display and necessitating personalized explanations for patients to understand them. Therefore, our goal was to design and implement a novel radiotherapy menu in a patient portal to improve patient access to and understanding of their radiotherapy treatment plans. METHODS: A prototype radiotherapy menu was developed in our institution's patient portal following a participatory stakeholder co-design methodology. Customizable page templates were designed to render key radiotherapy data in the portal's patient-facing mobile phone app. DICOM-RT data were used to provide patients with relevant treatment parameters and generate pre-treatment 3D visualizations of planned treatment beams, while the mCODE data standard was used to provide post-treatment summaries of the delivered treatments. A focus group was conducted to gather initial patient feedback on the menu. RESULTS: Pre-treatment: the radiotherapy menu provides patients with a personalized treatment plan overview, including a personalized explanation of their treatment, along with an interactive 3D rendering of their body, and treatment beams for visualization. Post-treatment: a summary of the delivered radiotherapy is provided, allowing patients to retain a concise personal record of their treatment that can easily be shared with future healthcare providers. Focus group feedback was overwhelmingly positive. Patients highlighted how the intuitive presentation of their complex radiotherapy data would better prepare them for their radiation treatments. CONCLUSIONS: We successfully designed and implemented a prototype radiotherapy menu in our institution's patient portal that improves patient access to and understanding of their radiotherapy data. We used the mCODE data standard to generate post-treatment summaries in a way that is easily shareable and interoperable.

It's time to address fear of cancer recurrence in family caregivers: usability study of an virtual version of the Family Caregiver-Fear Of Recurrence Therapy (FC-FORT).

Background: Family caregivers of cancer survivors experience equal or greater levels of fear of cancer recurrence (FCR) than survivors themselves. Some interventions have demonstrated their ability to reduce FCR among cancer survivors and dyads (patient and caregivers). However, to date, no validated intervention exists to focus solely on family caregiver's FCR. Objectives: This study aimed to (1) adapt the evidence-based in-person Fear Of Recurrence Therapy (FORT) for family caregivers (referred here in as FC-FORT) and to a virtual delivery format and (2) test its usability when offered virtually. Methods: The adaptation of FC-FORT was overseen by an advisory board and guided by the Information Systems Research Framework. Following this adaptation, female family caregivers and therapists were recruited for the usability study. Participants took part in 7 weekly virtual group therapy sessions, a semi-structured exit interview and completed session feedback questionnaires. Therapists were offered a virtual training and weekly supervision. Fidelity of treatment administration was assessed each session. Quantitative data were analyzed using descriptive statistics. Exit interviews were transcribed verbatim using NVivo Transcription and coded using conventional content analysis. Results were presented back to the advisory board to further refine FC-FORT. Results: The advisory board (n = 16) met virtually on 7 occasions to adapt FC-FORT (i.e., patient manuals, virtual format) and discuss recruitment strategies. Minor (e.g., revised text, adapted materials to virtual format) and major adaptations (e.g., added and rearranged sessions) were made to FC-FORT and subsequently approved by the advisory board. Four family caregivers and three therapists took part in the first round of the usability testing. Six family caregivers and the same three therapists took part in the second round. Overall, participants were very satisfied with FC-FORT's usability. Qualitative analysis identified 4 key themes: usability of FC-FORT, satisfaction and engagement with content, group cohesion, and impact of FC-FORT. All participants indicated that they would recommend FC-FORT to others as is. Conclusions: Using a multidisciplinary advisory board, our team successfully adapted FC-FORT and tested its usability using videoconferencing. Results from this study indicate that the efficacy and acceptability of FC-FORT are now ready to be tested in a larger pilot study.

Exploring Cancer Patients' Perceptions of Accessing and Experience with Using the Educational Material in the Opal Patient Portal.

PURPOSE: Opal is a new patient-centered mobile application that gives cancer patients access to their real time medical data in conjunction with disease- and treatment-specific patient education material. Few studies have focused on patients' experiences with such mobile applications. This study's objectives were to (1) explore cancer patients' perceptions of accessing the educational materials through Opal and (2) explore their experiences using these educational materials. METHODS: A qualitative descriptive design was used. Patients were invited to participate in the study via Opal itself. Semi-structured individual interviews were done in person or over the phone, transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Nine women were interviewed. Three themes were identified as participants spoke about their perceptions of and experiences with Opal. First, Opal makes me feel like I have more control, conveying how learning more about their diagnosis and treatments allowed patients to advocate for themselves and plan their care. Second, Opal tends to reassure me, illustrating that having access to information was reassuring. Lastly, Opal is just starting to have information which could help meet my needs, reflecting patients' belief Opal is on the right track but could provide more of their medical record, treating team contact information and education material. CONCLUSION: Patients can feel more empowered when using patient-centered mobile applications, and mobile applications have potential for improving collaboration with healthcare professionals and care coordination. Healthcare professionals, including oncologists and nurses, should support patients' use of mobile applications and integrate them in their patient interactions.

Developing education materials for caregivers of culturally and linguistically diverse patients: Insights from a qualitative analysis of caregivers' needs, access and understanding of information.

OBJECTIVES: To explore the information needs of caregivers of culturally and linguistically diverse (CALD) patients, and how they access and understand health information related to the management of their care person's chronic illness(es). BACKGROUND: Caregivers of CALD patients experience greater unmet needs compared to the general caregiver population. They experience many challenges in identifying resources and accessing formal supports to aid in self-management behaviours. METHODS: Eleven caregivers were recruited from outpatient clinics in Québec, Canada. Consenting caregivers participated in one face-to-face or phone interview. A qualitative descriptive design and inductive content analysis were used to identify themes. RESULTS: Caregivers described a "village" approach to caregiving in which more than one individual was involved in patient care. The specific roles ascribed to caregivers defined their information needs. Caregivers described two categories of information needs: perceived and unperceived. Perceived information needs were explicit, and centred on the medical management of illnesses. Unperceived needs were unrecognized knowledge gaps that emerged during interviews and focused on self-care. CONCLUSION: Although caregivers' perceived needs are often met, their unperceived needs remain unmet. Health-care providers should perform need assessments to identify caregivers' unperceived needs, with the aims of providing culturally competent care and ongoing support.

Patient experiences of in-hospital preparations for follow-up care at home.

AIMS AND OBJECTIVES: To examine patient experiences of hospital-based discharge preparation for referral for follow-up home care services. To identify aspects of discharge preparation that will assist patients with their transition from hospital-based care to home-based follow-up care. BACKGROUND: To improve patients' transitions from hospital-based care to community-based home care, hospitals incorporate home care referral processes into discharge planning. This includes patient preparation for follow-up home care services. While there is evidence to support that such preparation needs to be more patient-centred to be effective, there is little knowledge of patient experiences of preparation that would guide improvements. DESIGN: Qualitative descriptive study. METHODS: The study was carried out at a supra-regional hospital in Eastern Canada. Findings are based on thematic content analysis of 13 semi-structured interviews of patients requiring home care after hospitalisation on a medical or surgical unit. Most interviews were held within one week of discharge. RESULTS: Patient experiences were associated with patient attitudes and levels of engagement in preparation. Attitudes and levels of engagement were seen as related to one another. Those who 'didn't really think about it', had low engagement, while those with the attitude 'guide me', looked for partnership. Those who had an attitude of 'this is what I want', had a very high level of engagement. CONCLUSIONS: Previous experience with home care services influenced patients' level of trust in the health care system, and ultimately shaped their attitudes towards and levels of engagement in preparation. RELEVANCE TO CLINICAL PRACTICE: Patient preparation for follow-up home care can be improved by assessing their knowledge of and previous experiences with home care. Patients recognised as using a proactive approach may be highly vulnerable.

Mental health care professionals' experiences with the discharge planning process and transitioning patients attending outpatient clinics into community care.

BACKGROUND: Health care reform promotes delivery of mental health care in the community. Outpatient mental healthcare professionals (HCPs) are pressured to discharge patients. This study's purpose: to understand the experience and perceptions of mental HCPs with discharge planning and transitioning patients into community care. METHODS: Twelve HCPs participated in semi-structured qualitative interviews. FINDINGS: Three main categories: engaging in the discharge planning process, making the transition smooth, and guiding values emerged. A conceptual framework was created to explain the phenomenon. CONCLUSION: HCPs valued strengthening partnerships and building relationships to ensure smooth transition. Sufficient resources and trust imperative for safe patient discharge.

Meaning-making and psychological adjustment to cancer: development of an intervention and pilot results.

PURPOSE/OBJECTIVES: To develop an intervention that uniquely addresses the existential impact of cancer through meaning-making coping strategies and to explore the intervention's impact on psychological adjustment. DESIGN: Descriptive, qualitative approach to develop the intervention; one-group pre- and post-test design to pilot test the intervention. SETTING: Patients' homes or ambulatory oncology clinics affiliated with a university health center in eastern Canada. SAMPLE: 18 participants who were newly diagnosed in the past three months (n = 14), had completed treatment (n = 1), or were facing recurrence (n = 3) of breast (n = 10) or colorectal (n = 8) cancer. METHODS: Data were collected during interviews using a prototype intervention for trauma patients, and content was analyzed on an ongoing basis to fit the needs of the cancer population. Pretest and post-test questionnaires were administered to determine the intervention's effect. MAIN RESEARCH VARIABLES: Meaning-making intervention (MMI), patients' background variables, disease- or treatment-related symptoms, and psychological adjustment. FINDINGS: The MMI for patients with cancer consisted of as many as four two-hour, individualized sessions and involved the acknowledgment of losses and life threat, the examination of critical past challenges, and plans to stay committed to life goals. At post-test, participants significantly improved in self-esteem and reported a greater sense of security in facing the uncertainty of cancer. CONCLUSIONS: Findings suggest that meaning-making coping can be facilitated and lead to positive psychological outcomes following a cancer diagnosis. IMPLICATIONS FOR NURSING: The MMI offers a potentially effective and structured approach to address and monitor cancer-related existential issues. Findings are useful for designing future randomized, controlled trials.

Meaning-making intervention during breast or colorectal cancer treatment improves self-esteem, optimism, and self-efficacy.

Existential issues often accompany a diagnosis of cancer and remain one aspect of psychosocial oncology care for which there is a need for focused, empirically tested interventions. This study examined the efficacy of a novel psychological intervention specifically designed to address existential issues through the use of meaning-making coping strategies on psychological adjustment to cancer. Eighty-two breast or colorectal cancer patients were randomly chosen to receive routine care (control group) or up to four sessions that explored the meaning of the emotional responses and cognitive appraisals of each individual's cancer experience within the context of past life events and future goals (experimental group). This paper reports the results from 74 patients who completed and returned pre- and post-test measures for self-esteem, optimism, and self-efficacy. After controlling for baseline scores, the experimental group participants demonstrated significantly higher levels of self-esteem, optimism, and self-efficacy compared to the control group. The results are discussed in light of the theoretical and clinical implications of meaning-making coping in the context of stress and illness.

Exploring the value of audiotapes for health literacy: a systematic review.

OBJECTIVE: To evaluate the efficacy of audiotapes as a health information exchange intervention, specifically looking for use with the "hard-to-reach" population. METHODS: Examined electronic databases and journals for articles that evaluated potential of audiotapes as an educational tool within diverse populations. The systematic review included randomized controlled trials, surveys and exploratory articles. Primary outcome variables analyzed were knowledge and recall, behavioral change, anxiety, self-care, and satisfaction. RESULTS: Audiotapes were used to record consultations and health-related information in specific health situations. No studies were found that targeted the needs of the "hard-to-reach" population. With the exception of positive patient satisfaction, the benefits of audio taped messages remain unclear. PRACTICE IMPLICATIONS: If even the average person is compromised in the context of information exchange, populations with communication barriers are at even greater risk. Research needs to be conducted, aimed at determining whether audiotapes enhance communication between the "hard-to-reach" population and health professionals.

Clarifying "meaning" in the context of cancer research: a systematic literature review.

OBJECTIVES: This article synthesizes the published literature related to the construct of meaning in the adult cancer population. METHODS: The databases CancerLit, CINAHL, Medline, PsychINFO, and the Journal of Psychosocial Oncology and PsychoOncology were searched to identify all studies related to meaning. The methodological aspects of all studies are described and the conceptual aspects are summarized only from those studies that met criteria for methodological rigor and validity of findings. The definitions for global meaning, appraised meaning, search for meaning, and meaning as outcome as proposed by Park and Folkman were used to interpret the findings. RESULTS: Of 44 studies identified, 26 met the criteria for methodological rigor. There is strong empirical and qualitative evidence of a relationship between meaning as an outcome of and psychosocial adjustment to cancer. SIGNIFICANCE OF RESULTS: The qualitative findings are considered useful for the development of psychosocial interventions aimed at helping cancer patients cope with and even derive positive benefit from their experience. However, variations in the conceptual and operational definitions, frequent reliance on homogeneous and convenience sampling, and the lack of experimental designs are considered to be methodological limitations that need to be addressed to advance the study of meaning in the context of cancer.