Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop.

PURPOSE: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. METHODS: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. RESULTS: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. CONCLUSION: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.

An intervention to maximize medication management by caregivers of persons with memory loss: Intervention overview and two-month outcomes.

Overseeing medication-taking is a critical aspect of dementia caregiving. This trial examined a tailored, problem-solving intervention designed to maximize medication management practices among caregivers of persons with memory loss. Eighty-three community-dwelling dyads (patient + informal caregiver) with a baseline average of 3 medication deficiencies participated. Home- and telephone-based sessions were delivered by nurse or social worker interventionists and addressed basics of managing medications, plus tailored problem solving for specific challenges. The outcome of medication management practices was assessed using the Medication Management Instrument for Deficiencies in the Elderly (MedMaIDE) and an investigator-developed Medication Deficiency Checklist (MDC). Linear mixed modeling showed both the intervention and usual care groups had fewer medication management problems as measured by the MedMaIDE (F = 6.91, p < .01) and MDC (F = 9.72, p < .01) at 2 months post-intervention. Reduced medication deficiencies in both groups suggests that when nurses or social workers merely raise awareness of the importance of medication adherence, there may be benefit.

Mothering With Advanced Ovarian Cancer: "You've Got to Find That Little Thing That's Going to Make You Strong".

BACKGROUND: Mothers with ovarian cancer are at risk of experiencing additional demands given their substantial symptom burden and accelerated disease progression. OBJECTIVE: This study describes the experience of mothers with ovarian cancer, elucidating the interaction between their roles as mothers and patients with cancer. METHODS: We conducted a secondary analysis of focus groups with women with advanced ovarian cancer. Using descriptive coding, we developed a coding framework based on emerging findings and group consensus. We then identified higher-order themes capturing the breadth of experiences described by mothers with ovarian cancer. RESULTS: Eight of the 13 participants discussed motherhood. The mean age of participants was 48.38 (SD, 7.17) years. All women were white (9/9), most had some college education (6/9), and the majority were married (5/9). Mean time since diagnosis was 7.43 (SD, 4.69) months; more than half of women (5/9) were currently receiving treatment. Themes and exemplar quotes reflected participants' evolving self-identities from healthy mother to cancer patient to woman mothering with cancer. Subthemes related to how motherhood was impacted by symptoms, demands of treatment, and the need to gain acceptance of living with cancer. CONCLUSIONS: The experience of motherhood impacts how women experience cancer and how they evolve as survivors. Similarly, cancer influences mothering. IMPLICATIONS FOR PRACTICE: Healthcare providers should understand and address the needs of mothers with ovarian cancer. This study adds to the limited literature in this area and offers insight into the unique needs faced by women mothering while facing advanced cancer.

The application of crowdsourcing approaches to cancer research: a systematic review.

Crowdsourcing is "the practice of obtaining participants, services, ideas, or content by soliciting contributions from a large group of people, especially via the Internet." (Ranard et al. J. Gen. Intern. Med. 29:187, 2014) Although crowdsourcing has been adopted in healthcare research and its potential for analyzing large datasets and obtaining rapid feedback has recently been recognized, no systematic reviews of crowdsourcing in cancer research have been conducted. Therefore, we sought to identify applications of and explore potential uses for crowdsourcing in cancer research. We conducted a systematic review of articles published between January 2005 and June 2016 on crowdsourcing in cancer research, using PubMed, CINAHL, Scopus, PsychINFO, and Embase. Data from the 12 identified articles were summarized but not combined statistically. The studies addressed a range of cancers (e.g., breast, skin, gynecologic, colorectal, prostate). Eleven studies collected data on the Internet using web-based platforms; one recruited participants in a shopping mall using paper-and-pen data collection. Four studies used Amazon Mechanical Turk for recruiting and/or data collection. Study objectives comprised categorizing biopsy images (n = 6), assessing cancer knowledge (n = 3), refining a decision support system (n = 1), standardizing survivorship care-planning (n = 1), and designing a clinical trial (n = 1). Although one study demonstrated that "the wisdom of the crowd" (NCI Budget Fact Book, 2017) could not replace trained experts, five studies suggest that distributed human intelligence could approximate or support the work of trained experts. Despite limitations, crowdsourcing has the potential to improve the quality and speed of research while reducing costs. Longitudinal studies should confirm and refine these findings.

Creating Individualized Symptom Management Goals and Strategies for Cancer-Related Fatigue for Patients With Recurrent Ovarian Cancer.

BACKGROUND: Cancer-related fatigue (CRF) is one of the most common symptoms among women with recurrent ovarian cancer, yet it remains extremely difficult to manage. Symptom management typically requires patients to set goals and strategies to manage their CRF, but little is known about how to create individualized CRF symptom management goals and strategies. OBJECTIVE: The aim of this study was to describe cancer patients' goals and strategies for managing CRF along with their process of individualizing both. METHODS: This study is a qualitative analysis with supportive quantitative description of a Web-based symptom management randomized clinical trial, the WRITE (Written Representational Intervention to Ease) Symptoms study. Researchers conducted a content analysis on 47 participants' CRF symptom care plans to identify common themes in participants' goals, categorize strategies, and describe the individualization process. RESULTS: Four general themes were identified among participants' CRF goals: (1) enjoying time with friends and family, (2) doing the things I enjoy, (3) having energy to be physically active, and (4) keeping up with what I need to do. Cancer-related fatigue strategies were categorized into 13 groups including conserving energy, increasing activity, and talking with healthcare providers. A multistep individualization process resulted in personally meaningful strategies. CONCLUSIONS: The process by which participants individualized their CRF strategies consisted of identifying, confirming, testing, and evaluating different CRF strategies and resulted in refined, specific, and individualized strategies intended to eventually ensure participants achieve their goal. IMPLICATIONS FOR PRACTICE: Clinicians can assist patients in individualizing their CRF goals and strategies. Individualization of CRF goals and strategies assists patients in visualizing how improving CRF will impact their life.

Representational Approach: A Conceptual Framework to Guide Patient Education Research and Practice.

Illness representations are cognitive structures that individuals rely on to understand and explain their illnesses and associated symptoms. The Representational Approach (RA) to patient education offers a theoretically based, clinically useful model that can support oncology nurses to develop a shared understanding of patients' illness representations to collaboratively develop highly personalized plans for symptom management and other important self-management behaviors. This article discusses theoretical underpinnings, practical applications, challenges, and future directions for incorporating illness representations and the RA in clinical and research endeavors.