TY - JOUR AU - Pitrou, Isabelle AU - Petrangelo, Adriano AU - Besson, Charlotte AU - Pepe, Carmela AU - Waschke, Helen Annika AU - Agulnik, Jason AU - Gonzalez, V. Anne AU - Ezer, Nicole PY - 2025/3/28 TI - Lung Cancer Screening in Family Members and Peers of Patients With Lung Cancer: Protocol for a Prospective Cohort Study JO - JMIR Res Protoc SP - e58529 VL - 14 KW - lung cancer KW - low-dose CT KW - chest tomography KW - lung cancer screening KW - patient advocacy KW - early detection of cancer KW - referral and consultation KW - cohort study KW - patient empowerment KW - patient experience N2 - Background: Low-dose computed tomography (LDCT) screening is promising for the early detection of lung cancer (LC) and the reduction of LC-related mortality. Despite the implementation of LC screening programs worldwide, recruitment is challenging. While recruitment for LC screening is based on physician referrals and mass advertising, novel recruitment strategies are needed to improve the enrollment of high-risk individuals into LC screening. Objective: We aim to identify whether patients with LC can act as advocates to enroll their family members and close contacts into LC screening and whether this strategy increases screening uptake at the population level. Methods: We designed a prospective cohort study comprising 2 cohorts constituted between June 2023 and January 2024 with a prospective follow-up of 18 months. Patients with LC (cohort 1) are approached at clinics of the McGill University Health Centre, educated on tools for communicating with family members and close contacts about the benefits of LC screening, and invited to refer their close ones. Referred individuals (cohort 2) are directed to this study?s web-based questionnaire to assess their LC risk score with the PLCOm2012 (Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial) prediction model. Individuals meeting the eligibility criteria for LC screening (PLCOm2012 score ?2% and aged 55-74 years) are directed toward the Quebec LC screening program. Data collected include sociodemographic characteristics, health literacy and smoking status (all participants), patient activation (cohort 1), perceived risk of LC, and generalized anxiety at baseline and at 28 days (cohort 2). LDCT completion within 18 months from referral is assessed from health records. Focus groups will identify the barriers and facilitators in the uptake of LC screening and preventative behaviors based on perceived genetic and clinical LC risks. The primary outcomes are the number of referred participants per survivor of LC and the mean risk of LC of the referred population based on PLCOm2012 scores. The secondary outcomes are the proportion of (1) participants eligible for LC screening; (2) participants eligible for screening who complete LDCT screening within 18 months of referral from a survivor of LC; (3) participants showing interest in genetic testing to inform LC risk; and (4) participants showing interest in a smoking cessation program. Multivariable logistic regression will identify the predictive factors of being referred for LC screening. PLCOm2012 scores will be compared for referred participants and controls from the provincial LC screening program. Results: Overall, 25 survivors of LC and 84 close contacts were enrolled from June 2023 to January 2024, with followed up through July 2025. The results are expected by the end of 2025. Conclusions: We describe an approach to LC screening referral, leveraging patients with LC as advocates to increase screening awareness and uptake among their family and peers. Trial Registration: ClinicalTrials.gov NCT05645731; https://clinicaltrials.gov/ct2/show/NCT05645731 International Registered Report Identifier (IRRID): DERR1-10.2196/58529 UR - https://www.researchprotocols.org/2025/1/e58529 UR - http://dx.doi.org/10.2196/58529 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58529 ER - TY - JOUR AU - Reuther, Christina AU - von Essen, Louise AU - Mustafa, Imran Mudassir AU - Saarijärvi, Markus AU - Woodford, Joanne PY - 2025/1/28 TI - Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial JO - JMIR Form Res SP - e67171 VL - 9 KW - childhood cancer survivor KW - cognitive behavioral therapy KW - engagement KW - internet-administered intervention KW - log-data KW - parents N2 - Background: Parents of children treated for cancer may experience psychological difficulties including depression, anxiety, and posttraumatic stress. Digital interventions, such as internet-administered cognitive behavioral therapy, offer an accessible and flexible means to support parents. However, engagement with and adherence to digital interventions remain a significant challenge, potentially limiting efficacy. Understanding factors influencing user engagement and adherence is crucial for enhancing the acceptability, feasibility, and efficacy of these interventions. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy (LICBT)?based self-help intervention for parents of children treated for cancer, (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer or internet-based self-help for parents of children who have completed cancer treatment]). EJDeR included 2 LICBT techniques?behavioral activation and worry management. Subsequently, we conducted the ENGAGE feasibility trial and EJDeR was found to be acceptable and feasible. However, intervention adherence rates were marginally under progression criteria. Objective: This study aimed to (1) describe user engagement with the EJDeR intervention and examine whether (2) sociodemographic characteristics differed between adherers and nonadherers, (3) depression and anxiety scores differed between adherers and nonadherers at baseline, (4) user engagement differed between adherers and nonadherers, and (5) user engagement differed between fathers and mothers. Methods: We performed a secondary analysis of ENGAGE data, including 71 participants. User engagement data were collected through log-data tracking, for example, communication with e-therapists, homework submissions, log-ins, minutes working with EJDeR, and modules completed. Chi-square tests examined differences between adherers and nonadherers and fathers and mothers concerning categorical data. Independent-samples t tests examined differences regarding continuous variables. Results: Module completion rates were higher among those who worked with behavioral activation as their first LICBT module versus worry management. Of the 20 nonadherers who opened the first LICBT module allocated, 30% (n=6) opened behavioral activation and 70% (n=14) opened worry management. No significant differences in sociodemographic characteristics were found. Nonadherers who opened behavioral activation as the first LICBT module allocated had a significantly higher level of depression symptoms at baseline than adherers. No other differences in depression and anxiety scores between adherers and nonadherers were found. Minutes working with EJDeR, number of log-ins, days using EJDeR, number of written messages sent to e-therapists, number of written messages sent to participants, and total number of homework exercises submitted were significantly higher among adherers than among nonadherers. There were no significant differences between fathers and mothers regarding user engagement variables. Conclusions: Straightforward techniques, such as behavioral activation, may be well-suited for digital delivery, and more complex techniques, such as worry management, may require modifications to improve user engagement. User engagement was measured behaviorally, for example, through log-data tracking, and future research should measure emotional and cognitive components of engagement. Trial Registration: ISRCTN Registry 57233429; https://doi.org/10.1186/ISRCTN57233429 UR - https://formative.jmir.org/2025/1/e67171 UR - http://dx.doi.org/10.2196/67171 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67171 ER - TY - JOUR AU - Fong, Allan AU - Boxley, Christian AU - Schubel, Laura AU - Gallagher, Christopher AU - AuBuchon, Katarina AU - Arem, Hannah PY - 2025/1/17 TI - Identifying Complex Scheduling Patterns Among Patients With Cancer With Transportation and Housing Needs: Feasibility Pilot Study JO - JMIR Cancer SP - e57715 VL - 11 KW - patient scheduling KW - scheduling complexities KW - temporal data mining KW - dataset KW - breast cancer KW - social determinant of health KW - oncology KW - metastasis KW - cancer patient KW - social support KW - community health worker KW - housing need KW - care KW - transportation KW - algorithm N2 - Background: Patients with cancer frequently encounter complex treatment pathways, often characterized by challenges with coordinating and scheduling appointments at various specialty services and locations. Identifying patients who might benefit from scheduling and social support from community health workers or patient navigators is largely determined on a case-by-case basis and is resource intensive. Objective: This study aims to propose a novel algorithm to use scheduling data to identify complex scheduling patterns among patients with transportation and housing needs. Methods: We present a novel algorithm to calculate scheduling complexity from patient scheduling data. We define patient scheduling complexity as an aggregation of sequence, resolution, and facility components. Schedule sequence complexity is the degree to which appointments are scheduled and arrived to in a nonchronological order. Resolution complexity is the degree of no shows or canceled appointments. Location complexity reflects the proportion of appointment dates at 2 or more different locations. Schedule complexity captures deviations from chronological order, unresolved appointments, and coordination across multiple locations. We apply the scheduling complexity algorithm to scheduling data from 38 patients with breast cancer enrolled in a 6-month comorbidity management intervention at an urban hospital in the Washington, DC area that serves low-income patients. We compare the scheduling complexity metric with count-based metrics: arrived ratio, rescheduled ratio, canceled ratio, and no-show ratio. We defined an aggregate count-based adjustment metric as the harmonic mean of rescheduled ratio, canceled ratio, and no-show ratio. A low count-based adjustment metric would indicate that a patient has fewer disruptions or changes in their appointment scheduling. Results: The patients had a median of 88 unique appointments (IQR 60.3), 62 arrived appointments (IQR 47.8), 13 rescheduled appointments (IQR 13.5), 9 canceled appointments (IQR 10), and 1.5 missed appointments (IQR 5). There was no statistically significant difference in count-based adjustments and scheduling complexity bins (?24=6.296, P=.18). In total, 5 patients exhibited high scheduling complexity with low count-based adjustments. A total of 2 patients exhibited high count-based adjustments with low scheduling complexity. Out of the 15 patients that indicated transportation or housing insecurity issues in conversations with community health workers, 86.7% (13/15) patients were identified as medium or high scheduling complexity while 60% (9/15) were identified as medium or high count-based adjustments. Conclusions: Scheduling complexity identifies patients with complex but nonchronological scheduling behaviors who would be missed by traditional count-based metrics. This study shows a potential link between transportation and housing needs with schedule complexity. Scheduling complexity can complement count-based metrics when identifying patients who might need additional care coordination support especially as it relates to transportation and housing needs. Trial Registration: ClinicalTrials.gov NCT04836221; https://clinicaltrials.gov/study/NCT04836221 UR - https://cancer.jmir.org/2025/1/e57715 UR - http://dx.doi.org/10.2196/57715 ID - info:doi/10.2196/57715 ER - TY - JOUR AU - Semple, Jane Cherith AU - O'Neill, Carla AU - Sheehan, Sarah AU - McCance, Tanya AU - Drury, Amanda AU - Hanna, R. Jeffrey PY - 2024/12/10 TI - An e-Learning Intervention for Professionals to Promote Family-Centered Cancer Care When a Significant Caregiver for Children Is at End of Life: Mixed Methods Evaluation Study JO - J Med Internet Res SP - e65619 VL - 26 KW - e-learning KW - intervention evaluation KW - mixed methods KW - end-of-life care KW - educational intervention KW - professionals KW - self-efficacy KW - cancer KW - family-centered care KW - cancer care KW - person-based approach KW - qualitative KW - evidence-based KW - parent KW - adverse outcome KW - eHealth N2 - Background: Families are often unsure how best to prepare dependent children for the death of a significant caregiver with a poor cancer prognosis and seek guidance and support from health care teams. Health and social care professionals (hereafter referred to as professionals) often lack educational opportunities to gain the desired knowledge, skills, and confidence to provide family-centered supportive cancer care. e-Learning has positively impacted access and reach, improving educational opportunities in health care. Objective: We aimed to evaluate the acceptability, usability, and effectiveness of an evidence-based, theory-driven e-learning intervention to equip and promote professionals? self-efficacy to deliver family-centered supportive cancer care when a significant caregiving member for dependent children is at the end of life. Methods: Guided by the ?person-based approach,? a mixed methods outcome evaluation was used. To determine the effect on self-efficacy, participants completed a validated pretest and posttest 12-item self-efficacy survey. The use of one-on-one, remote semistructured interviews and single-item questions determined the usability by professionals of the e-learning intervention and the acceptability of perceived learning in clinical practice. To generate enhanced insights, quantitative and qualitative data were integrated through a 4-stage, modified pillar integration process. Results: Overall, 158 participants completed the pretest survey for the e-learning resource, with 99 (62.7%) completing the posttest survey. Semistructured interviews were conducted with 12 professionals at least 1 month after the intervention. Findings highlighted a statistically significant improvement in posttest self-efficacy (99/158, 62.7%; P<.001). Usability of the e-learning intervention was positive, with participants reporting that it was clear and organized (mean 4.84, SD 0.373), the layout was appealing (mean 4.71, SD 0.539), the language was easy to understand (mean 4.71, SD 0.407), and graphics and media were purposeful (mean 4.76, SD 0.495) and engaging (mean 4.67, SD 0.703). Determining acceptability, participants considered that the intervention would positively impact practice (mean 4.60, SD 0.589) and increase knowledge (mean 4.56, SD 0.677), with appropriate practical examples to support learning (mean 4.58, SD 0.610). Following engagement with the e-learning intervention, professionals reported preparedness to deliver supportive adult-professional end-of-life cancer care, when an adult with significant caregiving responsibilities is dying. Findings demonstrated transferable learning to additional contexts, such as other close adult-child relational bonds (grandparents) and to life-limiting conditions. Conclusions: The systematic and iterative person-based approach optimized the acceptability of a novel e-learning intervention, having the potential to promote family-centered supportive end-of-life cancer care. This accessible e-learning intervention makes an important contribution to the recognized global gap of educational interventions in this field. Equipping professionals with family-centered supportive end-of-life care improves self-efficacy and preparedness to engage in challenging conversations, with the potential to promote better outcomes for affected adults and children and mediate adverse outcomes for adults and children before and after bereavement. UR - https://www.jmir.org/2024/1/e65619 UR - http://dx.doi.org/10.2196/65619 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65619 ER - TY - JOUR AU - Mueller, L. Emily AU - Cochrane, R. Anneli AU - Campbell, E. Madison AU - Nikkhah, Sarah AU - Holden, J. Richard AU - Miller, D. Andrew PY - 2024/10/17 TI - An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study JO - JMIR Cancer SP - e52128 VL - 10 KW - oncology KW - supportive care KW - mHealth KW - children KW - caregivers KW - mobile phones N2 - Background: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers? perceptions and areas for improvement, and validate the app?s design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child?s medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements. UR - https://cancer.jmir.org/2024/1/e52128 UR - http://dx.doi.org/10.2196/52128 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52128 ER - TY - JOUR AU - Deribe, Leul AU - Girma, Eshetu AU - Lindström, Nataliya AU - Gidey, Abdulkadir AU - Teferra, Solomon AU - Addissie, Adamu PY - 2024/10/10 TI - Association of Family-Centered Care With Psychological Distress Among Caregivers of Children With Cancer at a Tertiary-Level Hospital in Ethiopia: Cross-Sectional Study JO - JMIR Cancer SP - e54715 VL - 10 KW - child cancer KW - psychological distress KW - Ethiopia KW - parent KW - caregivers KW - family N2 - Background: Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress. Objective: The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia. Methods: An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95% CI was calculated, and a P value less than .05 was considered statistically significant. Results: A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2%), 35 (9.1%), and 51 (13.3%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6% (95% CI 28.9%-38.3%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95% CI 1.25-5.76) were significantly associated with higher level of PD. Conclusions: A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse. UR - https://cancer.jmir.org/2024/1/e54715 UR - http://dx.doi.org/10.2196/54715 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54715 ER - TY - JOUR AU - Campbell, B. Grace AU - Kim, Hansol AU - Klinedinst, C. Tara AU - Klinger, Julie AU - Lee, Ji Young AU - Donovan, S. Heidi PY - 2024/10/3 TI - Needs of Patients With Gynecologic Cancer and Their Caregivers for Obtaining mHealth-Supported Self-Management: Focus Group Study JO - JMIR Cancer SP - e48465 VL - 10 KW - gynecologic oncology KW - gynecologic cancer KW - self-management support KW - user-centered design KW - cancer distress KW - self-management KW - caregiver support KW - cancer information KW - women's health KW - family support KW - informal caregivers KW - informal care KW - mhealth N2 - Background: Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads. Objective: We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers. Methods: We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified ?closest support person? (caregiver). A semistructured focus group guide was used to elicit information on patients? and caregivers? perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups. Results: A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1?gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2?desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3?interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others? knowledge; patients and caregivers desire having control over sharing of information with other family members. Conclusions: Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers. UR - https://cancer.jmir.org/2024/1/e48465 UR - http://dx.doi.org/10.2196/48465 UR - http://www.ncbi.nlm.nih.gov/pubmed/39361371 ID - info:doi/10.2196/48465 ER - TY - JOUR AU - Nic Giolla Easpaig, Brona AU - Newman, Bronwyn AU - Johnson, Judith AU - Laidsaar-Powell, Rebekah AU - Sansom-Daly, M. Ursula AU - Jones, Lucy AU - Hofstätter, Lukas AU - Robertson, G. Eden AU - Mears, Stephen AU - Sattarshetty, Kabir AU - Harrison, Reema PY - 2024/9/13 TI - Supporting Carers: Study Protocol of a Meta-Review of Psychosocial Interventions for Carers of People With Cancer JO - JMIR Res Protoc SP - e56403 VL - 13 KW - cancer KW - carer KW - caregiver KW - psychosocial KW - supportive intervention KW - psychosocial interventions KW - carers KW - caregivers KW - study protocol KW - well-being KW - wellbeing KW - end-users KW - evidence-based KW - evidence-based program KW - mental health N2 - Background: While there is a clear need for psychosocial interventions that promote the well-being of carers of patients with cancer, the corresponding evidence base is disparate, complex, and difficult for end users to navigate and interpret. Carers remain undersupported with a lack of dedicated, effective, evidence-based programs. We will conduct a meta-review to synthesize this evidence and determine the state of science in this field. Objective: This study aims to address the question, ?what psychosocial interventions are available to promote the well-being of carers for people with cancer?? Methods: A meta-review will synthesize the relevant reviews of psychosocial interventions that have been developed and evaluated with carers for people with cancer. A total of 4 electronic databases (PsycInfo, MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews) will be searched for reviews published between January 2013 and December 2023. A team-based approach will be taken for screening and assessment of the returned records against the eligibility criteria to determine inclusion. Included reviews will be critically appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. Relevant data on study characteristics, carer and patient populations, intervention details, and psychosocial outcomes will be extracted, synthesized, and the findings will be presented in a narrative format. Results: It is anticipated that the study will be completed by October 2024. Conclusions: Ensuring that carers have access to evidence-based programs that promote their well-being as they care for loved ones is critical. This meta-review will contribute to program development and translation efforts by providing a clear picture of the intervention evidence base of carers of patients with cancer and identifying notable strengths, weaknesses, and gaps across the literature. The findings are anticipated to offer future directions to advance research in the field. Trial Registration: PROSPERO (CRD42023403219); https://tinyurl.com/4tnzv49s International Registered Report Identifier (IRRID): DERR1-10.2196/56403 UR - https://www.researchprotocols.org/2024/1/e56403 UR - http://dx.doi.org/10.2196/56403 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56403 ER - TY - JOUR AU - Boudreau, Hannah Jacqueline AU - Moo, R. Lauren AU - Kennedy, A. Meaghan AU - Conti, Jennifer AU - Anwar, Chitra AU - Pimentel, B. Camilla AU - Nearing, A. Kathryn AU - Hung, W. William AU - Dryden, M. Eileen PY - 2024/5/7 TI - Needs for Successful Engagement in Telemedicine Among Rural Older US Veterans and Their Caregivers: Qualitative Study JO - JMIR Form Res SP - e50507 VL - 8 KW - caregivers KW - geriatrics KW - older adults KW - rural veterans KW - rural KW - specialty care KW - telehealth KW - telemedicine KW - veterans N2 - Background: Telemedicine is an important option for rural older adults who often must travel far distances to clinics or forgo essential care. In 2014, the Geriatric Research, Education, and Clinical Centers (GRECC) of the US Veterans Health Administration (VA) established a national telemedicine network called GRECC Connect. This network increased access to geriatric specialty care for the 1.4 million rural VA-enrolled veterans aged 65 years or older. The use of telemedicine skyrocketed during the COVID-19 pandemic, which disproportionately impacted older adults, exacerbating disparities in specialty care access as overburdened systems shut down in-person services. This surge presented a unique opportunity to study the supports necessary for those who would forgo telemedicine if in-person care were available. Objective: In spring 2021, we interviewed veterans and their informal caregivers to (1) elicit their experiences attempting to prepare for a video visit with a GRECC Connect geriatric specialist and (2) explore facilitators and barriers to successful engagement in a telemedicine visit. Methods: We conducted a cross-sectional qualitative evaluation with patients and their caregivers who agreed to participate in at least 1 GRECC Connect telemedicine visit in the previous 3 months. A total of 30 participants from 6 geographically diverse GRECC Connect hub sites agreed to participate. Semistructured interviews were conducted through telephone or the VA?s videoconference platform for home telemedicine visits (VA Video Connect) per participant preference. We observed challenges and, when needed, provided real-time technical support to facilitate VA Video Connect use for interviews. All interviews were recorded with permission and professionally transcribed. A team of 5 researchers experienced in qualitative research analyzed interview transcripts using rapid qualitative analysis. Results: From 30 participant interviews, we identified the following 4 categories of supports participants described regarding successful engagement in telemedicine, as defined by visit completion, satisfaction, and willingness to engage in telemedicine in the future: (1) caregiver presence to facilitate technology setup and communication; (2) flexibility in visit modality (eg, video from home or a clinic or telephone); (3) technology support (eg, determining device compatibility or providing instruction and on-demand assistance); and (4) assurance of comfort with web-based communication, including orientation to features like closed captioning. Supports were needed at multiple points before the visit, and participants stressed the importance of eliciting the varying needs and preferences of each patient-caregiver dyad. Though many initially agreed to a telemedicine visit because of pandemic-related clinic closures, participants were satisfied with telemedicine and willing to use it for other types of health care visits. Conclusions: To close gaps in telemedicine use among rural older adults, supports must be tailored to individuals, accounting for technology availability and comfort, as well as availability of and need for caregiver involvement. Comprehensive scaffolding of support starts well before the first telemedicine visit. UR - https://formative.jmir.org/2024/1/e50507 UR - http://dx.doi.org/10.2196/50507 UR - http://www.ncbi.nlm.nih.gov/pubmed/38713503 ID - info:doi/10.2196/50507 ER - TY - JOUR AU - Springer, Franziska AU - Maier, Ayline AU - Friedrich, Michael AU - Raue, Simon Jan AU - Finke, Gandolf AU - Lordick, Florian AU - Montgomery, Guy AU - Esser, Peter AU - Brock, Hannah AU - Mehnert-Theuerkauf, Anja PY - 2024/4/25 TI - Digital Therapeutic (Mika) Targeting Distress in Patients With Cancer: Results From a Nationwide Waitlist Randomized Controlled Trial JO - J Med Internet Res SP - e51949 VL - 26 KW - digital therapeutic KW - digital health KW - mobile health KW - app KW - cancer KW - randomized controlled trial KW - supportive care KW - oncology KW - access to care KW - distress KW - depression KW - anxiety KW - fatigue KW - mobile phone N2 - Background: Distress is highly prevalent among patients with cancer, but supportive care needs often go unmet. Digital therapeutics hold the potential to overcome barriers in cancer care and improve health outcomes. Objective: This study conducted a randomized controlled trial to investigate the efficacy of Mika, an app-based digital therapeutic designed to reduce distress across the cancer trajectory. Methods: This nationwide waitlist randomized controlled trial in Germany enrolled patients with cancer across all tumor entities diagnosed within the last 5 years. Participants were randomized into the intervention (Mika plus usual care) and control (usual care alone) groups. The participants completed web-based assessments at baseline and at 2, 6, and 12 weeks. The primary outcome was the change in distress from baseline to week 12, as measured by the National Comprehensive Cancer Network Distress Thermometer. Secondary outcomes included depression, anxiety (Hospital Anxiety and Depression Scale), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and quality of life (Clinical Global Impression-Improvement Scale). Intention-to-treat and per-protocol analyses were performed. Analyses of covariance were used to test for outcome changes over time between the groups, controlling for baseline. Results: A total of 218 patients (intervention: n=99 and control: n=119) were included in the intention-to-treat analysis. Compared with the control group, the intervention group reported greater reductions in distress (P=.03; ?p²=0.02), depression (P<.001; ?p²=0.07), anxiety (P=.03; ?p²=0.02), and fatigue (P=.04; ?p²=0.02). Per-protocol analyses revealed more pronounced treatment effects, with the exception of fatigue. No group difference was found for quality of life. Conclusions: Mika effectively diminished distress in patients with cancer. As a digital therapeutic solution, Mika offers accessible, tailored psychosocial and self-management support to address the unmet needs in cancer care. Trial Registration: German Clinical Trials Register (DRKS) DRKS00026038; https://drks.de/search/en/trial/DRKS00026038 UR - https://www.jmir.org/2024/1/e51949 UR - http://dx.doi.org/10.2196/51949 UR - http://www.ncbi.nlm.nih.gov/pubmed/38663007 ID - info:doi/10.2196/51949 ER - TY - JOUR AU - Shalaby, Reham AU - Vuong, Wesley AU - Agyapong, Belinda AU - Gusnowski, April AU - Surood, Shireen AU - Agyapong, Vincent PY - 2024/4/24 TI - Cancer Care Supportive Text Messaging Program (Text4Hope) for People Living With Cancer and Their Caregivers During the COVID-19 Pandemic: Longitudinal Observational Study JO - JMIR Form Res SP - e53668 VL - 8 KW - Text4Hope Cancer Care KW - COVID-19 KW - cancer KW - caregivers KW - mental health KW - anxiety KW - depression KW - cancer care KW - Canada KW - Canadian KW - treatment KW - stress N2 - Background: Cancer is the leading cause of death in Canada, and living with cancer generates psychological demands, including depression and anxiety among cancer survivors and caregivers. Text4Hope-Cancer Care SMS text messaging?based service was provided to people with cancer and caregivers during the COVID-19 pandemic to support their mental health. Objective: The aim of this study is to examine the clinical effectiveness of and satisfaction with Text4Hope-Cancer Care in addressing mental health conditions among people living with cancer and caregivers. Methods: The study was conducted in Alberta, Canada. People who were diagnosed or receiving cancer treatment and caregivers self-subscribed to receive 3-months daily supportive cognitive behavioral therapy?based SMS text messages and a web-based survey was sent at designated time points to collect clinical and nonclinical data. The Hospital Anxiety and Depression scale (HADS) was used to examine changes in anxiety and depression symptoms after receiving the service. Satisfaction with the service was assessed using a survey with a Likert scale. Descriptive and inferential statistics were used, and test significance was considered with P?.05. Results: Overall, 107 individuals subscribed to the service, and 93 completed the program (completion rate 93/107, 86.9%). A significant improvement in the anxiety symptoms (HADS-Anxiety [HADS-A] subscale) was reported after 3 months of Text4Hope-Cancer Care (t11=2.62; P=.02), with medium effect size (Hedges g=0.7), but not depression symptoms (HADS-Depression [HADS-D] subscale). Subscribers expressed high satisfaction and agreed that the service has helped them to cope with mental health symptoms and improve their quality of life. Most subscribers read the SMS text messages more than once (30/30, 100%); took time to reflect or took a beneficial action after reading the messages (27/30, 90%); and highly agreed (27/30, >80%) with the value of the received supportive SMS text messages as being relevant, succinct, affirmative, and positive. All subscribers recommended SMS text messaging for stress, anxiety, and depression and for cancer care support (30/30, 100%). Conclusions: Text4Hope-Cancer Care was well-perceived and effectively addressed anxiety symptoms among people living with cancer and caregivers during the peak of the COVID-19 pandemic. This study provides evidence-based support and insight for policy and stakeholders to implement similar convenient, economic, and accessible mental health services that support vulnerable populations during crises. International Registered Report Identifier (IRRID): RR2-10.2196/20240 UR - https://formative.jmir.org/2024/1/e53668 UR - http://dx.doi.org/10.2196/53668 UR - http://www.ncbi.nlm.nih.gov/pubmed/38657234 ID - info:doi/10.2196/53668 ER - TY - JOUR AU - Kim, J. Jacqueline H. AU - Kagawa Singer, Marjorie AU - Bang, Lisa AU - Ko, Amy AU - Nguyen, Becky AU - Chen Stokes, Sandy AU - Lu, Qian AU - Stanton, L. Annette PY - 2024/4/22 TI - Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study JO - JMIR Res Protoc SP - e50032 VL - 13 KW - Asian American KW - disparities KW - metastatic cancer KW - psychosocial KW - supportive care KW - unmet needs KW - well-being N2 - Background: Asian Americans with metastatic cancer are an understudied population. The Describing Asian American Well-Being and Needs in Cancer (DAWN) Study was designed to understand the supportive care needs of Chinese-, Vietnamese-, and Korean-descent (CVK) patients with metastatic cancer. Objective: This study aims to present the DAWN Study protocol involving a primarily qualitative, convergent, mixed methods study from multiple perspectives (patients or survivors, caregivers, and health care professionals). Methods: CVK Americans diagnosed with solid-tumor metastatic cancer and their caregivers were recruited nationwide through various means (registries, community outreach newsletters, newspapers, radio advertisements, etc). Potentially eligible individuals were screened and consented on the web or through a phone interview. The study survey and interview for patients or survivors and caregivers were provided in English, traditional/simplified Chinese and Cantonese/Mandarin, Vietnamese, and Korean, and examined factors related to facing metastatic cancer, including quality of life, cultural values, coping, and cancer-related symptoms. Community-based organizations assisted in recruiting participants, developing and translating study materials, and connecting the team to individuals for conducting interviews in Asian languages. Health care professionals who have experience working with CVK patients or survivors with metastatic solid cancer were recruited through referrals from the DAWN Study community advisory board and were interviewed to understand unmet supportive care needs. Results: Recruitment began in November 2020; data collection was completed in October 2022. A total of 66 patients or survivors, 13 caregivers, and 15 health care professionals completed all portions of the study. We completed data management in December 2023 and will submit results for patients or survivors and caregivers to publication outlets in 2024. Conclusions: Future findings related to this protocol will describe and understand the supportive care needs of CVK patients or survivors with metastatic cancer and will help develop culturally appropriate psychosocial interventions that target known predictors of unmet supportive care needs in Chinese, Vietnamese, and Korean Americans with metastatic cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/50032 UR - https://www.researchprotocols.org/2024/1/e50032 UR - http://dx.doi.org/10.2196/50032 UR - http://www.ncbi.nlm.nih.gov/pubmed/38648633 ID - info:doi/10.2196/50032 ER - TY - JOUR AU - Laidsaar-Powell, Rebekah AU - Giunta, Sarah AU - Butow, Phyllis AU - Keast, Rachael AU - Koczwara, Bogda AU - Kay, Judy AU - Jefford, Michael AU - Turner, Sandra AU - Saunders, Christobel AU - Schofield, Penelope AU - Boyle, Frances AU - Yates, Patsy AU - White, Kate AU - Miller, Annie AU - Butt, Zoe AU - Bonnaudet, Melanie AU - Juraskova, Ilona PY - 2024/4/17 TI - Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers JO - JMIR Med Educ SP - e50118 VL - 10 KW - family carers KW - patient education KW - health professional education KW - web-based intervention KW - mobile phone N2 - Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill?equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO?pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including ?think-aloud? interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small ?snackable? sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. UR - https://mededu.jmir.org/2024/1/e50118 UR - http://dx.doi.org/10.2196/50118 UR - http://www.ncbi.nlm.nih.gov/pubmed/38630531 ID - info:doi/10.2196/50118 ER - TY - JOUR AU - Zhang, Yingzi AU - Flannery, Marie AU - Zhang, Zhihong AU - Underhill-Blazey, Meghan AU - Bobry, Melanie AU - Leblanc, Natalie AU - Rodriguez, Darcey AU - Zhang, Chen PY - 2024/2/5 TI - Digital Health Psychosocial Intervention in Adult Patients With Cancer and Their Families: Systematic Review and Meta-Analysis JO - JMIR Cancer SP - e46116 VL - 10 KW - cancer KW - anxiety KW - decision-making KW - depression KW - digital health KW - distress KW - family KW - mental health KW - mortality KW - psychosocial intervention KW - quality of life N2 - Background: Patients with cancer and their families often experience significant distress and deterioration in their quality of life. Psychosocial interventions were used to address patients? and families? psychosocial needs. Digital technology is increasingly being used to deliver psychosocial interventions to patients with cancer and their families. Objective: A systematic review and meta-analysis were conducted to review the characteristics and effectiveness of digital health interventions on psychosocial outcomes in adult patients with cancer and their family members. Methods: Databases (PubMed, Cochrane Library, Web of Science, Embase, CINAHL, PsycINFO, ProQuest Dissertations and Theses Global, and ClinicalTrials.gov) were searched for randomized controlled trials (RCTs) or quasi-experimental studies that tested the effects of a digital intervention on psychosocial outcomes. The Joanna Briggs Institute?s critical appraisal checklists for RCTs and quasi-experimental studies were used to assess quality. Standardized mean differences (ie, Hedges g) were calculated to compare intervention effectiveness. Subgroup analysis was planned to examine the effect of delivery mode, duration of the intervention, type of control, and dosage on outcomes using a random-effects modeling approach. Results: A total of 65 studies involving 10,361 patients (mean 159, SD 166; range 9-803 patients per study) and 1045 caregivers or partners (mean 16, SD 54; range 9-244 caregivers or partners per study) were included in the systematic review. Of these, 32 studies were included in a meta-analysis of the effects of digital health interventions on quality of life, anxiety, depression, distress, and self-efficacy. Overall, the RCT studies? general quality was mixed (applicable scores: mean 0.61, SD 0.12; range 0.38-0.91). Quasi-experimental studies were generally of moderate to high quality (applicable scores: mean 0.75, SD 0.08; range 0.63-0.89). Psychoeducation and cognitive-behavioral strategies were commonly used. More than half (n=38, 59%) did not identify a conceptual or theoretical framework. Most interventions were delivered through the internet (n=40, 62%). The median number of intervention sessions was 6 (range 1-56). The frequency of the intervention was highly variable, with self-paced (n=26, 40%) being the most common. The median duration was 8 weeks. The meta-analysis results showed that digital psychosocial interventions were effective in improving patients? quality of life with a small effect size (Hedges g=0.05, 95% CI ?0.01 to 0.10; I2=42.7%; P=.01). The interventions effectively reduced anxiety and depression symptoms in patients, as shown by moderate effect sizes on Hospital Anxiety and Depression Scale total scores (Hedges g=?0.72, 95% CI ?1.89 to 0.46; I2=97.6%; P<.001). Conclusions: This study demonstrated the effectiveness of digital health interventions on quality of life, anxiety, and depression in patients. Future research with a clear description of the methodology to enhance the ability to perform meta-analysis is needed. Moreover, this study provides preliminary evidence to support the integration of existing digital health psychosocial interventions in clinical practice. Trial Registration: PROSPERO CRD42020189698; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=189698 UR - https://cancer.jmir.org/2024/1/e46116 UR - http://dx.doi.org/10.2196/46116 UR - http://www.ncbi.nlm.nih.gov/pubmed/38315546 ID - info:doi/10.2196/46116 ER - TY - JOUR AU - Kwok, Ian AU - Lattie, Gardiner Emily AU - Yang, Dershung AU - Summers, Amanda AU - Grote, Veronika AU - Cotten, Paul AU - Moskowitz, Tedlie Judith PY - 2023/9/6 TI - Acceptability and Feasibility of a Socially Enhanced, Self-Guided, Positive Emotion Regulation Intervention for Caregivers of Individuals With Dementia: Pilot Intervention Study JO - JMIR Aging SP - e46269 VL - 6 KW - dementia KW - caregiving KW - eHealth KW - digital interventions KW - positive emotion KW - stress KW - coping N2 - Background: The responsibilities of being a primary caregiver for a loved one with dementia can produce significant stress for the caregiver, leading to deleterious outcomes for the caregiver?s physical and psychological health. Hence, researchers are developing eHealth interventions to provide support for caregivers. Members of our research team previously developed and tested a positive emotion regulation intervention that we delivered through videoconferencing, in which caregiver participants would meet one-on-one with a trained facilitator. Although proven effective, such delivery methods have limited scalability because they require significant resources in terms of cost and direct contact hours. Objective: This study aimed to conduct a pilot test of a socially enhanced, self-guided version of the positive emotion regulation intervention, Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF). Studies have shown that social presence or the perception of others in a virtual space is associated with enhanced learning and user satisfaction. Hence, the intervention leverages various social features (eg, discussion boards, podcasts, videos, user profiles, and social notifications) to foster a sense of social presence among participants and study team members. Methods: Usability, usefulness, feasibility, and acceptability data were collected from a pilot test in which participants (N=15) were given full access to the SAGE LEAF intervention over 6 weeks and completed preintervention and postintervention assessments (10/15, 67%). Preliminary outcome measures were also collected, with an understanding that no conclusions about efficacy could be made, because our pilot study did not have a control group and was not sufficiently powered. Results: The results suggest that SAGE LEAF is feasible, with participants viewing an average of 72% (SD 42%) of the total available intervention web pages. In addition, acceptability was found to be good, as demonstrated by participants? willingness to recommend the SAGE LEAF program to a friend or other caregiver. Applying Pearson correlational analyses, we found moderate, positive correlation between social presence scores and participants? willingness to recommend the program to others (r9=0.672; P=.03). We also found positive correlation between social presence scores and participants? perceptions about the overall usefulness of the intervention (r9=0.773; P=.009). This suggests that participants? sense of social presence may be important for the feasibility and acceptability of the program. Conclusions: In this pilot study, the SAGE LEAF intervention demonstrates potential for broad dissemination for dementia caregivers. We aim to incorporate participant feedback about how the social features may be improved in future iterations to enhance usability and to further bolster a sense of social connection among participants and study staff members. Next steps include partnering with dementia clinics and other caregiver-serving organizations across the United States to conduct a randomized controlled trial to evaluate the effectiveness of the intervention. UR - https://aging.jmir.org/2023/1/e46269 UR - http://dx.doi.org/10.2196/46269 UR - http://www.ncbi.nlm.nih.gov/pubmed/37672311 ID - info:doi/10.2196/46269 ER - TY - JOUR AU - Filipponi, Chiara AU - Chichua, Mariam AU - Masiero, Marianna AU - Mazzoni, Davide AU - Pravettoni, Gabriella PY - 2023/7/3 TI - Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study JO - JMIR Cancer SP - e41594 VL - 9 KW - pain KW - cancer KW - quality of life KW - social support KW - emotion KW - personality KW - decision-making N2 - Background: Cancer pain represents a challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated, and there is limited information on the related needs that patients and caregivers may have. Online platforms represent a fundamental tool for research to reveal the unmet needs of these users and their emotions outside the medical setting. Objective: This study aimed to (1) reveal the unmet needs of both patients and caregivers and (2) detect the emotional activation associated with cancer pain by analyzing the textual patterns of both users. Methods: A descriptive and quantitative analysis of qualitative data was performed in RStudio v.2022.02.3 (RStudio Team). We analyzed 679 posts (161 from caregivers and 518 from patients) published over 10 years on the ?cancer? subreddit of Reddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering, and emotion and sentiment analysis were conducted. Results: The language used for describing experiences related to cancer pain and expressed needs differed between patients and caregivers. For patients (agglomerative coefficient=0.72), the large cluster labeled unmet needs included the following clusters: (1A) reported experiences, with the subclusters (a) relationship with doctors/spouse and (b) reflections on physical features; and (1B) changes observed over time, with the subclusters (a) regret and (b) progress. For caregivers (agglomerative coefficient=0.80), the main clusters were as follows: (1A) social support and (1B) reported experiences, with the subclusters (a) psychosocial challenges and (b) grief. Moreover, comparison between the 2 groups (entanglement coefficient=0.28) showed that they shared a common cluster labeled uncertainty. Regarding emotion and sentiment analysis, patients expressed a significantly higher negative sentiment than caregivers (z=?2.14; P<.001). On the contrary, caregivers expressed a higher positive sentiment compared with patients (z=?2.26; P<.001), with trust (z=?4.12; P<.001) and joy (z=?2.03; P<.001) being the most prevalent positive emotions. Conclusions: Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations in the 2 groups. Moreover, our study findings highlight the importance of considering caregivers in medical care. Overall, this study increases knowledge about the unmet needs and emotions of patients and caregivers, which may have important clinical implications in pain management. UR - https://cancer.jmir.org/2023/1/e41594 UR - http://dx.doi.org/10.2196/41594 UR - http://www.ncbi.nlm.nih.gov/pubmed/37399067 ID - info:doi/10.2196/41594 ER - TY - JOUR AU - Lin, Yufen AU - Porter, S. Laura AU - Chee, Wonshik AU - Alese, B. Olatunji AU - Curseen, A. Kimberly AU - Higgins, K. Melinda AU - Northouse, Laurel AU - Xiao, Canhua PY - 2023/6/28 TI - A Web-Based Dyadic Intervention to Manage Psychoneurological Symptoms for Patients With Colorectal Cancer and Their Caregivers: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e48499 VL - 12 KW - chemotherapy KW - colorectal cancer KW - intervention KW - symptoms KW - web-based program N2 - Background: Patients with colorectal cancer (CRC) receiving chemotherapy often experience psychoneurological symptoms (PNS; ie, fatigue, depression, anxiety, sleep disturbance, pain, and cognitive dysfunction) that negatively impact both patients? and their caregivers? health outcomes. Limited information is available on PNS management for CRC patient and caregiver dyads. Objective: The purposes of this study are to (1) develop a web-based dyadic intervention for patients with CRC receiving chemotherapy and their caregivers (CRCweb) and (2) evaluate the feasibility, acceptability, and preliminary effects of CRCweb among patient-caregiver dyads in a cancer clinic. Methods: A mixed methods approach will be used. Semistructured interviews among 8 dyads will be conducted to develop CRCweb. A single-group pre- and posttest clinical trial will be used to examine the feasibility, acceptability, and preliminary effects of the intervention (CRCweb) among 20 dyads. Study assessments will be conducted before (T1) and after intervention (T2). Content analysis will be performed for semistructured interviews. Descriptive statistics will be calculated separately for patients and caregivers, and pre-post paired t tests will be used to evaluate treatment effects. Results: This study was funded in November 2022. As of April 2023, we have obtained institutional review board approval and completed clinical trial registration and are currently recruiting patient-caregiver dyads in a cancer clinic. The study is expected to be completed in October 2024. Conclusions: Developing a web-based dyadic intervention holds great promise to reduce the PNS burden in patients with CRC receiving chemotherapy and their caregivers. The findings from this study will advance intervention development and implementation of symptom management and palliative care for patients with cancer and their caregivers. Trial Registration: ClinicalTrials.gov NCT05663203; https://clinicaltrials.gov/ct2/show/NCT05663203 International Registered Report Identifier (IRRID): PRR1-10.2196/48499 UR - https://www.researchprotocols.org/2023/1/e48499 UR - http://dx.doi.org/10.2196/48499 UR - http://www.ncbi.nlm.nih.gov/pubmed/37379055 ID - info:doi/10.2196/48499 ER - TY - JOUR AU - Ahmad, Awais AU - Premanandan, Shweta AU - Langegård, Ulrica AU - Cajander, Åsa AU - Johansson, Birgitta AU - Carlsson, Maria AU - Tiblom Ehrsson, Ylva PY - 2023/5/30 TI - Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden JO - JMIR Cancer SP - e45748 VL - 9 KW - eHealth KW - subjective well-being KW - positive design KW - adaptability KW - informal caregivers KW - head and neck cancer KW - preparedness to care N2 - Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient?s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data. Results: We investigated informal caregivers? needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches. Conclusions: This study provided an in-depth understanding of informal caregivers? contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers? well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users? well-being and positive emotions, especially for informal caregivers of patients with HNC. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-057442 UR - https://cancer.jmir.org/2023/1/e45748 UR - http://dx.doi.org/10.2196/45748 UR - http://www.ncbi.nlm.nih.gov/pubmed/37252765 ID - info:doi/10.2196/45748 ER - TY - JOUR AU - Coumoundouros, Chelsea AU - Mårtensson, Erika AU - Ferraris, Giulia AU - Zuidberg, Margaux Justine AU - von Essen, Louise AU - Sanderman, Robbert AU - Woodford, Joanne PY - 2022/11/30 TI - Implementation of e?Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis JO - JMIR Ment Health SP - e41891 VL - 9 IS - 11 KW - informal caregivers KW - e?mental health KW - implementation KW - chronic diseases KW - systematic review KW - thematic synthesis KW - qualitative comparative analysis KW - Consolidated Framework for Implementation Research N2 - Background: Informal caregivers commonly experience mental health difficulties related to their caregiving role. e?Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e?mental health interventions are seldom implemented in real-world practice. Objective: This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e?mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e?mental health interventions for informal caregivers were explored using thematic synthesis. Methods: We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e?mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers? mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation. Results: Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored. Conclusions: e?Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e?mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators. Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2019-035406 UR - https://mental.jmir.org/2022/11/e41891 UR - http://dx.doi.org/10.2196/41891 UR - http://www.ncbi.nlm.nih.gov/pubmed/36314782 ID - info:doi/10.2196/41891 ER - TY - JOUR AU - Vasquez, S. Taylor AU - Bylund, L. Carma AU - Alpert, Jordan AU - Close, Julia AU - Le, Tien AU - Markham, Jennifer Merry AU - Taylor, B. Greenberry AU - Paige, R. Samantha PY - 2022/9/28 TI - Comparing Transactional eHealth Literacy of Individuals With Cancer and Surrogate Information Seekers: Mixed Methods Study JO - JMIR Form Res SP - e36714 VL - 6 IS - 9 KW - eHealth literacy KW - cancer communication KW - individuals with cancer KW - surrogate seekers KW - web-based information credibility appraisal N2 - Background: The number of adults entering higher-risk age groups for receiving a cancer diagnosis is rising, with predicted numbers of cancer cases expected to increase by nearly 50% by 2050. Living with cancer puts exceptional burdens on individuals and families during treatment and survivorship, including how they navigate their relationships with one another. One role that a member of a support network may enact is that of a surrogate seeker, who seeks information in an informal capacity on behalf of others. Individuals with cancer and surrogate seekers often use the internet to learn about cancer, but differences in their skills and strategies have received little empirical attention. Objective: This study aimed to examine the eHealth literacy of individuals with cancer and surrogate information seekers, including an investigation of how each group evaluates the credibility of web-based cancer information. As a secondary aim, we sought to explore the differences that exist between individuals with cancer and surrogate seekers pertaining to eHealth literacies and sociodemographic contexts. Methods: Between October 2019 and January 2020, we conducted a web-based survey of 282 individuals with cancer (n=185) and surrogate seekers (n=97). We used hierarchical linear regression analyses to explore differences in functional, communicative, critical, and translational eHealth literacy between individuals with cancer and surrogate seekers using the Transactional eHealth Literacy Instrument. Using a convergent, parallel mixed methods design, we also conducted a thematic content analysis of an open-ended survey response to qualitatively examine how each group evaluates web-based cancer information. Results: eHealth literacy scores did not differ between individuals with cancer and surrogate seekers, even after adjusting for sociodemographic variables. Individuals with cancer and surrogate seekers consider the credibility of web-based cancer information based on its channel (eg, National Institutes of Health). However, in evaluating web-based information, surrogate seekers were more likely than individuals with cancer to consider the presence and quality of scientific references supporting the information. Individuals with cancer were more likely than surrogate seekers to cross-reference other websites and web-based sources to establish consensus. Conclusions: Web-based cancer information accessibility and evaluation procedures differ among individuals with cancer and surrogate seekers and should be considered in future efforts to design web-based cancer education interventions. Future studies may also benefit from more stratified recruitment approaches and account for additional contextual factors to better understand the unique circumstances experienced within this population. UR - https://formative.jmir.org/2022/9/e36714 UR - http://dx.doi.org/10.2196/36714 UR - http://www.ncbi.nlm.nih.gov/pubmed/36170007 ID - info:doi/10.2196/36714 ER - TY - JOUR AU - Renner, Simon AU - Loussikian, Paul AU - Foulquié, Pierre AU - Arnould, Benoit AU - Marrel, Alexia AU - Barbier, Valentin AU - Mebarki, Adel AU - Schück, Stéphane AU - Bharmal, Murtuza PY - 2022/9/20 TI - Perceived Unmet Needs in Patients Living With Advanced Bladder Cancer and Their Caregivers: Infodemiology Study Using Data From Social Media in the United States JO - JMIR Cancer SP - e37518 VL - 8 IS - 3 KW - real-world evidence KW - unmet needs KW - quality of life KW - social media KW - bladder cancer KW - caregivers N2 - Background: Locally advanced or metastatic bladder cancer (BC), which is generally termed advanced BC (aBC), has a very poor prognosis, and in addition to its physical symptoms, it is associated with emotional and social challenges. However, few studies have assessed the unmet needs and burden of aBC from patient and caregiver perspectives. Infodemiology, that is, epidemiology based on internet health-related content, can help obtain more insights on patients? and caregivers? experiences with aBC. Objective: The study aimed to identify the main discussion themes and the unmet needs of patients with aBC and their caregivers through a mixed methods analysis of social media posts. Methods: Social media posts were collected between January 2015 and April 2021 from US geolocalized sites using specific keywords for aBC. Automatic natural language processing (regular expressions and machine learning) methods were used to filter out irrelevant content and identify verbatim posts from patients and caregivers. The verbatim posts were analyzed to identify main discussion themes using biterm topic modeling. Difficulties or unmet needs were further explored using qualitative research methods by 2 independent annotators until saturation of concepts. Results: A total of 688 posts from 262 patients and 1214 posts from 679 caregivers discussing aBC were identified. Analysis of 340 randomly selected patient posts and 423 randomly selected caregiver posts uncovered 33 unique unmet need categories among patients and 36 among caregivers. The main unmet patient needs were related to challenges regarding adverse events (AEs; 28/95, 29%) and the psychological impact of aBC (20/95, 21%). Other patient unmet needs identified were prognosis or diagnosis errors (9/95, 9%) and the need for better management of aBC symptoms (9/95, 9%). The main unmet caregiver needs were related to the psychological impacts of aBC (46/177, 26.0%), the need for support groups and to share experiences between peers (28/177, 15.8%), and the fear and management of patient AEs (22/177, 12.4%). Conclusions: The combination of manual and automatic methods allowed the extraction and analysis of several hundreds of social media posts from patients with aBC and their caregivers. The results highlighted the emotional burden of cancer for both patients and caregivers. Additional studies on patients with aBC and their caregivers are required to quantitatively explore the impact of this disease on quality of life. UR - https://cancer.jmir.org/2022/3/e37518 UR - http://dx.doi.org/10.2196/37518 UR - http://www.ncbi.nlm.nih.gov/pubmed/36125861 ID - info:doi/10.2196/37518 ER - TY - JOUR AU - McKeown, Eamonn AU - McGraw, Caroline AU - Holder, Pru AU - Shand, Jenny AU - Hirani, P. Shashivadan PY - 2022/9/16 TI - Acceptability and Impact of an Educational App (iCare) for Informal Carers Looking After People at Risk of Pressure Ulceration: Mixed Methods Pilot Study JO - JMIR Form Res SP - e36517 VL - 6 IS - 9 KW - pressure ulcers KW - informal carers KW - smartphone apps KW - mobile health KW - mHealth KW - educational technology KW - health education KW - mobile phone N2 - Background: Pressure ulcers are areas of skin damage resulting from sustained pressure. Informal carers play a central role in preventing pressure ulcers among older and disabled people living at home. Studies highlight the paucity of pressure ulcer training for informal carers and suggest that pressure ulcer risk is linked to high levels of carer burden. Objective: This pilot study evaluated a smartphone app with a specific focus on pressure ulcer prevention education for informal carers. The app was developed based on the principles of microlearning. The study aimed to explore carer perspectives on the acceptability of the app and determine whether the app increased knowledge and confidence in their caring role. Methods: In this concurrent mixed methods study, participants completed quantitative questionnaires at baseline and at the end of weeks 2 and 6, which examined caregiving self-efficacy, preparedness for caregiving, caregiver strain, pressure ulcer knowledge, and app acceptability and usability. A subsample of participants participated in a ?think aloud? interview in week 1 and semistructured interviews at the end of weeks 2 and 6. Results: Of the 32 participants, 23 (72%) participants completed the week 2 and 16 (50%) completed the week 6 questionnaires; 66% (21/32) of carers participated in qualitative ?think aloud? interviews, and 18 (56%) also participated in semistructured interviews at week 2, and 13 (41%) at week 6. Pressure ulcer knowledge scores significantly changed (F1,6.112=21.624; P=.001) from baseline (mean 37.5; SE 2.926) to the second follow-up (mean 59.72, SE 3.985). Regarding the qualitative data, the theme ?I?m more careful now and would react to signs of redness? captured participants? reflections on the new knowledge they had acquired, the changes they had made to their caring routines, their increased vigilance for signs of skin damage, and their intentions toward the app going forward. There were no significant results pertaining to improved preparedness for caregiving or caregiving self-efficacy or related to the Caregiver Strain Index. Participants reported above average usability scores on a scale of 0 to 100 (mean 69.94, SD 18.108). The app functionality and information quality were also rated relatively high on a scale of 0 to 5 (mean 3.84, SD 0.704 and mean 4.13, SD 0.452, respectively). Overall, 2 themes pertaining to acceptability and usability were identified: ?When you?re not used to these things, they take time to get the hang of? and ?It?s not a fun app but it is informative.? All participants (n=32, 100%) liked the microlearning approach. Conclusions: The iCare app offers a promising way to improve informal carers? pressure ulcer knowledge. However, to better support carers, the findings may reflect the need for future iterations of the app to use more interactive elements and the introduction of gamification and customization based on user preferences. UR - https://formative.jmir.org/2022/9/e36517 UR - http://dx.doi.org/10.2196/36517 UR - http://www.ncbi.nlm.nih.gov/pubmed/36112413 ID - info:doi/10.2196/36517 ER - TY - JOUR AU - Naunton Morgan, Bethan AU - Windle, Gill AU - Sharp, Rebecca AU - Lamers, Carolien PY - 2022/7/22 TI - eHealth and Web-Based Interventions for Informal Carers of People With Dementia in the Community: Umbrella Review JO - J Med Internet Res SP - e36727 VL - 24 IS - 7 KW - dementia KW - Alzheimer disease KW - informal KW - family KW - carers KW - caregivers KW - internet KW - online KW - technology KW - interventions N2 - Background: The prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature. Objective: This umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community. Methods: PsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported. Results: A total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies. Conclusions: Mixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research. Trial Registration: PROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559 UR - https://www.jmir.org/2022/7/e36727 UR - http://dx.doi.org/10.2196/36727 UR - http://www.ncbi.nlm.nih.gov/pubmed/35867388 ID - info:doi/10.2196/36727 ER - TY - JOUR AU - Skeens, Micah AU - Sezgin, Emre AU - Stevens, Jack AU - Landier, Wendy AU - Pai, Ahna AU - Gerhardt, Cynthia PY - 2022/7/21 TI - An mHealth App to Promote Adherence to Immunosuppressant Medication and Track Symptoms in Children After Hematopoietic Stem Cell Transplant: Protocol for a Mixed Methods Usability Study JO - JMIR Res Protoc SP - e39098 VL - 11 IS - 7 KW - medication adherence KW - digital health KW - mHealth KW - pediatrics KW - app KW - bone marrow transplant KW - adherence KW - usability KW - feasibility KW - caregivers KW - children KW - hematopoietic stem cell transplant KW - HSCT N2 - Background: In the United States, poor adherence accounts for up to 70% of all medication-related hospital admissions, resulting in $100 billion in health care costs annually. In pediatrics, adherence is largely dependent on caregivers. In a high-risk hematopoietic stem cell transplant (HSCT) population, caregivers are isolated with their child due to infection risk and must manage challenging treatment regimens at home, often with limited time and support. Complex behavioral interventions, typically employed to address adherence, are difficult to deliver and manage in the context of these daily tasks. The most successful adherence interventions, and thus improved clinical outcomes, have included mobile health (mHealth) reminder approaches and a direct measure of adherence. Objective: This is a 3-phase project, with this protocol describing phase 2, to determine the usability and feasibility of an mHealth app (BMT4me) designed to promote adherence to immunosuppressant medication and to track symptoms among children who received HSCT. Methods: This study uses an iterative convergent mixed methods design to develop and assess the usability and feasibility of an adherence digital health intervention. We will recruit 15 caregivers of pediatric patients receiving HSCT to complete user testing. Qualitative and quantitative data will be integrated to enhance and expand upon study findings. Results: Enrollment began in September 2021 and is ongoing. A total of 7 caregivers have enrolled. We anticipate completion by fall 2022. We anticipate high usability scores and a better understanding of unique features within the app that are needed for HSCT families post transplant. To date, usability scores among enrolled participants are greater than 70%. Feedback from qualitative interviews is being used to further adapt the app by adding specific weekly logs, call provider options, and voice to text. Conclusions: This protocol describes a mixed methods usability and feasibility study to develop and implement a smartphone app for caregivers of children receiving HSCT. The app was designed to improve immunosuppressant adherence and to track symptoms in the acute phase post discharge. Study findings will inform further refinement of the app and the feasibility of a pilot randomized controlled trial examining efficacy on clinical outcomes. Trial Registration: ClinicalTrials.gov NCT04976933; https://clinicaltrials.gov/ct2/show/NCT04976933 International Registered Report Identifier (IRRID): DERR1-10.2196/39098 UR - https://www.researchprotocols.org/2022/7/e39098 UR - http://dx.doi.org/10.2196/39098 UR - http://www.ncbi.nlm.nih.gov/pubmed/35862184 ID - info:doi/10.2196/39098 ER - TY - JOUR AU - Bylund, L. Carma AU - Wollney, N. Easton AU - Campbell-Salome, Gemme AU - Applebaum, J. Allison AU - Paige, R. Samantha AU - DeGruccio, Kennan AU - Weiss, Elisa AU - Sae-Hau, Maria AU - Arnold, Jason AU - Durante, Domenic AU - Amin, B. Tithi AU - Hampton, N. Chelsea AU - Fisher, L. Carla PY - 2022/7/5 TI - Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention JO - JMIR Cancer SP - e38722 VL - 8 IS - 3 KW - caregiver KW - clinician-patient communication KW - healthy communication practice KW - eHealth literacy KW - family communication KW - feasibility KW - acceptability KW - oncology KW - blood cancer KW - cancer patent KW - web-based information seeking KW - health information KW - clinical communication KW - smartphone KW - mobile phone N2 - Background: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. Objective: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. Methods: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). Results: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). Conclusions: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes. UR - https://cancer.jmir.org/2022/3/e38722 UR - http://dx.doi.org/10.2196/38722 UR - http://www.ncbi.nlm.nih.gov/pubmed/35788019 ID - info:doi/10.2196/38722 ER - TY - JOUR AU - Castro, R. Aimee AU - Arnaert, Antonia AU - Moffatt, Karyn AU - Kildea, John AU - Bitzas, Vasiliki AU - Tsimicalis, Argerie PY - 2021/12/13 TI - Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping With Palliative-Stage Cancer: Protocol for a User-Centered Design Study JO - JMIR Res Protoc SP - e34652 VL - 10 IS - 12 KW - respite care KW - caregivers KW - cancer KW - neoplasms KW - user-centered design KW - mobile applications KW - palliative care KW - home care services KW - information systems research framework KW - hospice and palliative care nursing N2 - Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. Objective: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. Methods: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. Results: We anticipate that preliminary results will be available by Spring 2022. Conclusions: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID): PRR1-10.2196/34652 UR - https://www.researchprotocols.org/2021/12/e34652 UR - http://dx.doi.org/10.2196/34652 UR - http://www.ncbi.nlm.nih.gov/pubmed/34898464 ID - info:doi/10.2196/34652 ER - TY - JOUR AU - Wan, Wei Su AU - Chong, Seng Choon AU - Toh, Ee-Lin AU - Lim, Hoon Siew AU - Loi, TT Carol AU - Lew, Henry Yuen Foong AU - Chua, Heng Matthew Chin AU - Jee, Pei Xin AU - Liu, Guangyu AU - Zhu, Lixia AU - Pikkarainen, Minna AU - He, Hong-Gu PY - 2021/12/7 TI - A Theory-Based, Multidisciplinary Approach to Cocreate a Patient-Centric Digital Solution to Enhance Perioperative Health Outcomes Among Colorectal Cancer Patients and Their Family Caregivers: Development and Evaluation Study JO - J Med Internet Res SP - e31917 VL - 23 IS - 12 KW - colorectal cancer KW - digital solutions KW - mobile health KW - psychosocial KW - mHealth KW - smartphone app KW - mobile phone app N2 - Background: Elective colorectal cancer (CRC) surgeries offer enhanced surgical outcomes but demand high self-efficacy in prehabilitation and competency in self-care and disease management postsurgery. Conventional strategies to meet perioperative needs have not been pragmatic, and there remains a pressing need for novel technologies that could improve health outcomes. Objective: The aim of this paper was to describe the development of a smartphone-based interactive CRC self-management enhancement psychosocial program (iCanManage) in order to improve health outcomes among patients who undergo elective CRC surgeries and their family caregivers. Methods: A multidisciplinary international team comprising physicians, specialist nurses, a psychologist, software engineers, academic researchers, cancer survivors, patient ambassadors, and ostomy care medical equipment suppliers was formed to facilitate the development of this patient-centric digital solution. The process occurred in several stages: (1) review of current practice through clinic visits and on-site observations; (2) review of literature and findings from preliminary studies; (3) content development grounded in an underpinning theory; (4) integration of support services; and (5) optimizing user experience through improving interface aesthetics and customization. In our study, 5 participants with CRC performed preliminary assessments on the quality of the developed solution using the 20-item user version of the Mobile App Rating Scale (uMARS), which had good psychometric properties. Results: Based on the collected uMARS data, the smartphone app was rated highly for functionality, aesthetics, information quality, and perceived impact, and moderately for engagement and subjective quality. Several limiting factors such as poor agility in the adoption of digital technology and low eHealth literacy were identified despite efforts to promote engagement and ensure ease of use of the mobile app. To overcome such barriers, additional app-training sessions, an instruction manual, and regular telephone calls will be incorporated into the iCanManage program during the trial period. Conclusions: This form of multidisciplinary collaboration is advantageous as it can potentially streamline existing care paths and allow the delivery of more holistic care to the CRC population during the perioperative period. Should the program be found to be effective and sustainable, hospitals adopting this digital solution may achieve better resource allocation and reduce overall health care costs in the long run. Trial Registration: ClinicalTrials.gov NCT04159363; https://clinicaltrials.gov/ct2/show/NCT04159363 UR - https://www.jmir.org/2021/12/e31917 UR - http://dx.doi.org/10.2196/31917 UR - http://www.ncbi.nlm.nih.gov/pubmed/34878991 ID - info:doi/10.2196/31917 ER - TY - JOUR AU - Luo, Yuanhui AU - Xia, Wei AU - Cheung, Tan Ankie AU - Ho, Kwan Laurie Long AU - Zhang, Jingping AU - Xie, Jianhui AU - Xiao, Pin AU - Li, William Ho Cheung PY - 2021/11/29 TI - Effectiveness of a Mobile Device?Based Resilience Training Program in Reducing Depressive Symptoms and Enhancing Resilience and Quality of Life in Parents of Children With Cancer: Randomized Controlled Trial JO - J Med Internet Res SP - e27639 VL - 23 IS - 11 KW - depressive symptoms KW - pediatric cancer KW - parents KW - quality of life KW - resilience KW - mobile phone N2 - Background: Caring for children with cancer can be a stressful experience for parents and may have negative effects on their physical and psychological well-being. Although evidence has shown that resilience is associated with positive psychological well-being, few interventions have been specifically designed to enhance the resilience of parents of children with cancer. Objective: The aim of this study is to examine the effectiveness of a mobile device?based resilience training program in reducing depressive symptoms and enhancing resilience and quality of life (QoL) in parents of children with cancer. Methods: Parents of children diagnosed with cancer were recruited from the pediatric oncology wards of 3 tertiary hospitals in China. The participants were randomly assigned to either the experimental group (52/103, 50.5%) to undergo an 8-week mobile device?based resilience training program or to the control group (51/103, 49.5%) to receive an 8-week program of placebo information. The study outcomes included resilience, depressive symptoms, and QoL, as measured by the Connor?Davidson Resilience Scale, the Self-Rating Depression Scale, and the Short Form of the 6-Dimension Health Survey, respectively. All data were collected at baseline and at 2 and 6 months of follow-up. The data analysis followed the intention-to-treat principle. A generalized estimating equation was used to examine the effects of the intervention. Results: The participants were mostly female (72/103, 69.9%), and their mean age was 33.6 (SD 5.2) years. The participants in the experimental group showed significantly higher levels of resilience (mean 67.96, SD 15.8 vs mean 58.27, SD 19.0; P<.001) and lower levels of depressive symptoms (mean 40.17, SD 9.9 vs mean 46.04, SD 10.9; P<.001) than those in the control group at 6 months of follow-up. The intervention showed statistically significant effects in improving resilience (?=6.082; P=.01) and decreasing depressive symptoms (?=?2.772; P=.04) relative to the control group. The QoL score in the experimental group was higher than that in the control group at 6 months of follow-up (mean 0.79, SD 0.2 vs mean 0.76, SD 0.3; P=.07); however, no statistically significant intervention effect was detected (?=.020; P=.38). Conclusions: The mobile device?based resilience training program effectively enhanced resilience and alleviated depressive symptoms in parents of children with cancer. It is highly recommended that health care professionals incorporate this resilience training program when providing psychological care to parents of children with cancer. Trial Registration: Clinical.Trials.gov NCT04038242; http://clinicaltrials.gov/ct2/show/NCT04038242 UR - https://www.jmir.org/2021/11/e27639 UR - http://dx.doi.org/10.2196/27639 UR - http://www.ncbi.nlm.nih.gov/pubmed/34847060 ID - info:doi/10.2196/27639 ER - TY - JOUR AU - Su, Zhaohui AU - Li, Xiaoshan AU - McDonnell, Dean AU - Fernandez, A. Andrea AU - Flores, E. Bertha AU - Wang, Jing PY - 2021/11/16 TI - Technology-Based Interventions for Cancer Caregivers: Concept Analysis JO - JMIR Cancer SP - e22140 VL - 7 IS - 4 KW - concept analysis KW - caregivers KW - cancer KW - oncology KW - technology-based interventions KW - mobile phone N2 - Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively. UR - https://cancer.jmir.org/2021/4/e22140 UR - http://dx.doi.org/10.2196/22140 UR - http://www.ncbi.nlm.nih.gov/pubmed/34783664 ID - info:doi/10.2196/22140 ER - TY - JOUR AU - Oakley-Girvan, Ingrid AU - Davis, Watkins Sharon AU - Kurian, Allison AU - Rosas, G. Lisa AU - Daniels, Jena AU - Palesh, Gronskaya Oxana AU - Mesia, J. Rachel AU - Kamal, H. Arif AU - Longmire, Michelle AU - Divi, Vasu PY - 2021/8/13 TI - Development of a Mobile Health App (TOGETHERCare) to Reduce Cancer Care Partner Burden: Product Design Study JO - JMIR Form Res SP - e22608 VL - 5 IS - 8 KW - cancer KW - oncology KW - mHealth KW - caregiver KW - cancer survivor KW - mobile app KW - smartphone KW - feasibility KW - caregiver burden KW - symptom reporting N2 - Background: Approximately 6.1 million adults in the United States serve as care partners for cancer survivors. Studies have demonstrated that engaging cancer survivors and their care partners through technology-enabled structured symptom collection has several benefits. Given the high utilization of mobile technologies, even among underserved populations and in low resource areas, mobile apps may provide a meaningful access point for all stakeholders for symptom management. Objective: We aimed to develop a mobile app incorporating user preferences to enable cancer survivors? care partners to monitor the survivors? health and to provide care partner resources. Methods: An iterative information gathering process was conducted that included (1) discussions with 138 stakeholders to identify challenges and gaps in survivor home care; (2) semistructured interviews with clinicians (n=3), cancer survivors (n=3), and care partners (n=3) to identify specific needs; and (3) a 28-day feasibility field test with seven care partners. Results: Health professionals noted the importance of identifying early symptoms of adverse events. Survivors requested modules on medication, diet, self-care, reminders, and a version in Spanish. Care partners preferred to focus primarily on the patient?s health and not their own. The app was developed incorporating quality-of-life surveys and symptom reporting, as well as resources on home survivor care. Early user testing demonstrated ease of use and app feasibility. Conclusions: TOGETHERCare, a novel mobile app, was developed with user input to track the care partner?s health and report on survivor symptoms during home care. The following two clinical benefits emerged: (1) reduced anxiety among care partners who use the app and (2) the potential for identifying survivor symptoms noted by the care partner, which might prevent adverse events. Trial Registration: ClinicalTrials.gov NCT04018677; https://clinicaltrials.gov/ct2/show/NCT04018677 UR - https://formative.jmir.org/2021/8/e22608 UR - http://dx.doi.org/10.2196/22608 UR - http://www.ncbi.nlm.nih.gov/pubmed/34398787 ID - info:doi/10.2196/22608 ER - TY - JOUR AU - Woodford, Joanne AU - Farrand, Paul AU - Hagström, Josefin AU - Hedenmalm, Li AU - von Essen, Louise PY - 2021/7/22 TI - Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study JO - JMIR Form Res SP - e22709 VL - 5 IS - 7 KW - parents KW - eMental health KW - internet-administered cognitive behavioral therapy KW - ICBT KW - TIDieR KW - CBT self-help KW - low-intensity CBT KW - mobile phone N2 - Background: Following the end of a child?s treatment for cancer, parents may report psychological distress. However, there is a lack of evidence-based interventions that are tailored to the population, and psychological support needs are commonly unmet. An internet-administered low-intensity cognitive behavioral therapy (LICBT)?based intervention (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer]) may provide a solution. Objective: The first objective is to provide an overview of a multimethod approach that was used to inform the development of the EJDeR intervention. The second objective is to provide a detailed description of the EJDeR intervention in accordance with the Template for Intervention Description and Replication (TIDieR) checklist. Methods: EJDeR was developed through a multimethod approach, which included the use of existing evidence, the conceptualization of distress, participatory action research, a cross-sectional survey, and professional and public involvement. Depending on the main presenting difficulty identified during assessment, LICBT behavioral activation or worry management treatment protocols are adopted for the treatment of depression or generalized anxiety disorder when experienced individually or when comorbid. EJDeR is delivered via the Uppsala University Psychosocial Care Programme (U-CARE) portal, a web-based platform that is designed to deliver internet-administered LICBT interventions and includes secure videoconferencing. To guide parents in the use of EJDeR, weekly written messages via the portal are provided by e-therapists comprising final year psychology program students with training in cognitive behavioral therapy. Results: An overview of the development process and a description of EJDeR, which was informed by the TIDieR checklist, are presented. Adaptations that were made in response to public involvement are highlighted. Conclusions: EJDeR represents a novel, guided, internet-administered LICBT intervention for supporting parents of children treated for cancer. Adopting the TIDieR checklist offers the potential to enhance fidelity to the intervention protocol and facilitate later implementation. The intervention is currently being tested in a feasibility study (the ENGAGE study). International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-023708 UR - https://formative.jmir.org/2021/7/e22709 UR - http://dx.doi.org/10.2196/22709 UR - http://www.ncbi.nlm.nih.gov/pubmed/34142662 ID - info:doi/10.2196/22709 ER - TY - JOUR AU - Kataoka, Yuki AU - Takemura, Tomoyasu AU - Sasajima, Munehiko AU - Katoh, Naoki PY - 2021/3/10 TI - Development and Early Feasibility of Chatbots for Educating Patients With Lung Cancer and Their Caregivers in Japan: Mixed Methods Study JO - JMIR Cancer SP - e26911 VL - 7 IS - 1 KW - cancer KW - caregivers KW - chatbot KW - lung cancer KW - mixed methods approach KW - online health KW - patients KW - symptom management education KW - web-based platform N2 - Background: Chatbots are artificial intelligence?driven programs that interact with people. The applications of this technology include the collection and delivery of information, generation of and responding to inquiries, collection of end user feedback, and the delivery of personalized health and medical information to patients through cellphone- and web-based platforms. However, no chatbots have been developed for patients with lung cancer and their caregivers. Objective: This study aimed to develop and evaluate the early feasibility of a chatbot designed to improve the knowledge of symptom management among patients with lung cancer in Japan and their caregivers. Methods: We conducted a sequential mixed methods study that included a web-based anonymized questionnaire survey administered to physicians and paramedics from June to July 2019 (phase 1). Two physicians conducted a content analysis of the questionnaire to curate frequently asked questions (FAQs; phase 2). Based on these FAQs, we developed and integrated a chatbot into a social network service (phase 3). The physicians and paramedics involved in phase I then tested this chatbot (? test; phase 4). Thereafter, patients with lung cancer and their caregivers tested this chatbot (? test; phase 5). Results: We obtained 246 questions from 15 health care providers in phase 1. We curated 91 FAQs and their corresponding responses in phase 2. In total, 11 patients and 1 caregiver participated in the ? test in phase 5. The participants were asked 60 questions, 8 (13%) of which did not match the appropriate categories. After the ? test, 7 (64%) participants responded to the postexperimental questionnaire. The mean satisfaction score was 2.7 (SD 0.5) points out of 5. Conclusions: Medical staff providing care to patients with lung cancer can use the categories specified in this chatbot to educate patients on how they can manage their symptoms. Further studies are required to improve chatbots in terms of interaction with patients. UR - https://cancer.jmir.org/2021/1/e26911 UR - http://dx.doi.org/10.2196/26911 UR - http://www.ncbi.nlm.nih.gov/pubmed/33688839 ID - info:doi/10.2196/26911 ER - TY - JOUR AU - Gupta, Vibhuti AU - Raj, Minakshi AU - Hoodin, Flora AU - Yahng, Lilian AU - Braun, Thomas AU - Choi, Won Sung PY - 2021/3/9 TI - Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study JO - JMIR Cancer SP - e26509 VL - 7 IS - 1 KW - hematopoietic stem cell transplantation KW - caregiver KW - mobile apps KW - questionnaire KW - survey KW - app KW - cancer KW - electronic health record KW - EHR KW - online portal KW - transplant KW - stem cell KW - management N2 - Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient?s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire?4, coping with the Brief COPE, and caregiver portal use to manage care recipient?s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918 UR - https://cancer.jmir.org/2021/1/e26509 UR - http://dx.doi.org/10.2196/26509 UR - http://www.ncbi.nlm.nih.gov/pubmed/33687332 ID - info:doi/10.2196/26509 ER - TY - JOUR AU - Ferré-Grau, Carme AU - Raigal-Aran, Laia AU - Lorca-Cabrera, Jael AU - Lluch-Canut, Teresa AU - Ferré-Bergadà, Maria AU - Lleixá-Fortuño, Mar AU - Puig-Llobet, Montserrat AU - Miguel-Ruiz, Dolores Maria AU - Albacar-Riobóo, Núria PY - 2021/1/22 TI - A Mobile App?Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial JO - JMIR Mhealth Uhealth SP - e21708 VL - 9 IS - 1 KW - clinical trial KW - caregiver KW - mobile phone app KW - intervention program KW - positive mental health KW - mobile health KW - health promotion KW - randomized controlled trial KW - nursing KW - caregiving KW - technology N2 - Background: While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective: The aim of this study was to evaluate the effectiveness of a smartphone app?based intervention program to increase positive mental health for nonprofessional caregivers. Methods: This study was a randomized controlled trial of 3 months? duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months? experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users? satisfaction was also measured. Results: In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1?Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P<.001; d=0.82). Significant changes were reported in 5 of the 6 factors, especially F5?Problem solving and self-actualization (5.69; P<.001; d=0.71), F2?Prosocial attitude (2.47; P<.001; d=1.18), and F3?Self-control (0.76; P=.03; d=0.50). The results of the ZBI-7 showed a decrease in caregiver burden in the intervention group, although the results were inconclusive. Approximately 93.9% (46/49) of the app users indicated that they would recommend the app to other caregivers and 56.3% (27/49) agreed that an extension of the program?s duration would be beneficial. Conclusions: The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app?based intervention programs may be useful tools for increasing nonprofessional caregivers? well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration: ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID): RR2-10.1186/s12889-019-7264-5 UR - http://mhealth.jmir.org/2021/1/e21708/ UR - http://dx.doi.org/10.2196/21708 UR - http://www.ncbi.nlm.nih.gov/pubmed/33480852 ID - info:doi/10.2196/21708 ER - TY - JOUR AU - Rozwadowski, Michelle AU - Dittakavi, Manasa AU - Mazzoli, Amanda AU - Hassett, L. Afton AU - Braun, Thomas AU - Barton, L. Debra AU - Carlozzi, Noelle AU - Sen, Srijan AU - Tewari, Muneesh AU - Hanauer, A. David AU - Choi, Won Sung PY - 2020/9/18 TI - Promoting Health and Well-Being Through Mobile Health Technology (Roadmap 2.0) in Family Caregivers and Patients Undergoing Hematopoietic Stem Cell Transplantation: Protocol for the Development of a Mobile Randomized Controlled Trial JO - JMIR Res Protoc SP - e19288 VL - 9 IS - 9 KW - family caregivers KW - mobile health app KW - mHealth KW - randomized controlled trial KW - wearable wrist sensor KW - hematopoietic stem cell transplantation KW - HSCT N2 - Background: Cancer patients who undergo allogeneic hematopoietic stem cell transplantation are among the most medically fragile patient populations with extreme demands for caregivers. Indeed, with earlier hospital discharges, the demands placed on caregivers continue to intensify. Moreover, an increased number of allogeneic hematopoietic stem cell transplantations are being performed worldwide, and this expensive procedure has significant economic consequences. Thus, the health and well-being of family caregivers have attracted widespread attention. Mobile health technology has been shown to deliver flexible, and time- and cost-sparing interventions to support family caregivers across the care trajectory. Objective: This protocol aims to leverage technology to deliver a novel caregiver-facing mobile health intervention named Roadmap 2.0. We will evaluate the effectiveness of Roadmap 2.0 in family caregivers of patients undergoing hematopoietic stem cell transplantation. Methods: The Roadmap 2.0 intervention will consist of a mobile randomized trial comparing a positive psychology intervention arm with a control arm in family caregiver-patient dyads. The primary outcome will be caregiver health-related quality of life, as assessed by the PROMIS Global Health scale at day 120 post-transplant. Secondary outcomes will include other PROMIS caregiver- and patient-reported outcomes, including companionship, self-efficacy for managing symptoms, self-efficacy for managing daily activities, positive affect and well-being, sleep disturbance, depression, and anxiety. Semistructured qualitative interviews will be conducted among participants at the completion of the study. We will also measure objective physiological markers (eg, sleep, activity, heart rate) through wearable wrist sensors and health care utilization data through electronic health records. Results: We plan to enroll 166 family caregiver-patient dyads for the full data analysis. The study has received Institutional Review Board approval as well as Code Review and Information Assurance approval from our health information technology services. Owing to the COVID-19 pandemic, the study has been briefly put on hold. However, recruitment began in August 2020. We have converted all recruitment, enrollment, and onboarding processes to be conducted remotely through video telehealth. Consent will be obtained electronically through the Roadmap 2.0 app. Conclusions: This mobile randomized trial will determine if positive psychology-based activities delivered through mobile health technology can improve caregiver health-related quality of life over a 16-week study period. This study will provide additional data on the effects of wearable wrist sensors on caregiver and patient self-report outcomes. Trial Registration: ClinicalTrials.gov NCT04094844; https://www.clinicaltrials.gov/ct2/show/NCT04094844 International Registered Report Identifier (IRRID): PRR1-10.2196/19288 UR - https://www.researchprotocols.org/2020/9/e19288 UR - http://dx.doi.org/10.2196/19288 UR - http://www.ncbi.nlm.nih.gov/pubmed/32945777 ID - info:doi/10.2196/19288 ER - TY - JOUR AU - Fuller-Tyszkiewicz, Matthew AU - Richardson, Ben AU - Little, Keriann AU - Teague, Samantha AU - Hartley-Clark, Linda AU - Capic, Tanja AU - Khor, Sarah AU - Cummins, A. Robert AU - Olsson, A. Craig AU - Hutchinson, Delyse PY - 2020/7/24 TI - Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial JO - JMIR Ment Health SP - e17541 VL - 7 IS - 7 KW - mHealth KW - mobile phone KW - caregiver KW - psychological stress KW - mental health N2 - Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app?based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being. Objective: This study aims to evaluate the effectiveness of a self-guided mobile app?based psychological intervention for people providing care to family or friends with a physical or mental disability. Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed. Results: In total, 25% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=?2.07; P=.04) and depressive symptoms (b=?1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=?1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=?0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58). Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170 UR - http://mental.jmir.org/2020/7/e17541/ UR - http://dx.doi.org/10.2196/17541 UR - http://www.ncbi.nlm.nih.gov/pubmed/32706716 ID - info:doi/10.2196/17541 ER - TY - JOUR AU - Shaffer, M. Kelly AU - Tigershtrom, Ashley AU - Badr, Hoda AU - Benvengo, Stephanie AU - Hernandez, Marisol AU - Ritterband, M. Lee PY - 2020/3/4 TI - Dyadic Psychosocial eHealth Interventions: Systematic Scoping Review JO - J Med Internet Res SP - e15509 VL - 22 IS - 3 KW - behavioral medicine KW - caregivers KW - couples therapy KW - dyads KW - eHealth KW - family therapy KW - internet interventions KW - psychosocial interventions KW - review N2 - Background: Dyadic psychosocial interventions have been found beneficial both for people coping with mental or physical health conditions as well as their family members and friends who provide them with support. Delivering these interventions via electronic health (eHealth) may help increase their scalability. Objective: This scoping review aimed to provide the first comprehensive overview of dyadic eHealth interventions for individuals of all ages affected by mental or physical illness and their family members or friends who support them. The goal was to understand how dyadic eHealth interventions have been used and to highlight areas of research needed to advance dyadic eHealth intervention development and dissemination. Methods: A comprehensive electronic literature search of PubMed, EMBASE, Cochrane, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO was conducted for articles published in the English language through March 2019. Eligible records described a psychosocial eHealth intervention that intervened with both care recipients and their support person. Results: A total of 7113 records were reviewed of which 101 met eligibility criteria. There were 52 unique dyadic eHealth interventions identified, which were tested across 73 different trials. Of the unique interventions, 33 were conducted among dyads of children and their supporting parent, 1 was conducted with an adolescent-young adult care recipient population, and the remaining 18 were conducted among adult dyads. Interventions targeting pediatric dyads most commonly addressed a mental health condition (n=10); interventions targeting adult dyads most commonly addressed cancer (n=9). More than three-fourths of interventions (n=40) required some human support from research staff or clinicians. Most studies (n=64) specified one or more primary outcomes for care recipients, whereas less than one-fourth (n=22) specified primary outcomes for support persons. Where specified, primary outcomes were most commonly self-reported psychosocial or health factors for both care recipients (n=43) and support persons (n=18). Results of the dyadic eHealth intervention tended to be positive for care recipients, but evidence of effects for support persons was limited because of few studies specifying primary outcomes for supporters. Trials of dyadic eHealth interventions were most commonly randomized controlled trials (RCTs; n=44), and RCTs most commonly compared the dyadic eHealth intervention to usual care alone (n=22). Conclusions: This first comprehensive review of dyadic eHealth interventions demonstrates that there is substantial, diverse, and growing literature supporting this interventional approach. However, several significant gaps were identified. Few studies were designed to evaluate the unique effects of dyadic interventions relative to individual interventions. There was also limited assessment and reporting of outcomes for support persons, and there were no interventions meeting our eligibility criteria specifically targeting the needs of older adult dyads. Findings highlight areas of research opportunities for developing dyadic eHealth interventions for novel populations and for increasing access to dyadic care. UR - https://www.jmir.org/2020/3/e15509 UR - http://dx.doi.org/10.2196/15509 UR - http://www.ncbi.nlm.nih.gov/pubmed/32130143 ID - info:doi/10.2196/15509 ER - TY - JOUR AU - Milios, Athena AU - McGrath, Patrick AU - Baillie, Hannah PY - 2020/2/12 TI - A Weekly, Evidence-Based Health Letter for Caregivers (90Second Caregiver): Usability Study JO - JMIR Form Res SP - e14496 VL - 4 IS - 2 KW - caregivers KW - mental health KW - usability KW - depression KW - anxiety KW - stigma KW - hope KW - health information KW - persuasive design N2 - Background: Informal caregivers are family members or close friends who provide unpaid help to individuals with acute or chronic health conditions so that they can manage daily life tasks. The greatest source of health information is the internet for meeting the needs of caregivers. However, information on the internet may not be scientifically valid, it may be written in language that is difficult to read, and is often in very large doses. 90Second Caregiver is a health letter whose aim is to disseminate knowledge to caregivers in a user-friendly, weekly format, in order to improve their wellbeing. Objective: The main objective was to test a sample of 90Second Caregiver health letters in order to assess their usability and to optimize the design and content of the health letters. Methods: Usability research themes were assessed using semi-structured phone interviews, incorporating the Think Aloud method with retrospective questioning. Results: Usability was assessed in the context of five main themes: understandability and learnability, completeness, relevance, and quality and credibility of the health letter content, as well as design and format. Caregivers generally provided positive feedback regarding the usability of the letters. The usability feedback was used to refine 90Second Caregiver in order to improve the design and content of the series. Based on the results of this study, it may be of maximum benefit to target the series towards individuals who are new to caregiving or part-time caregivers, given that these caregivers of the sample found the letters more useful and relevant and had the most positive usability experiences. Conclusions: The findings assisted in the improvement of the 90Second Caregiver template, which will be used to create future health letters and refine the letters that have already been created. The findings have implications for who the 90Second Caregiver series should be targeting (ie, newer or part-time caregivers) in order to be maximally impactful in improving mental health and wellbeing-related outcomes for caregivers, such as self-efficacy and caregiving knowledge. The results of this study may be generalizable to the examination of other electronic health information formats, making them valuable to future researchers testing the usability of health information products. In addition, the methods used in this study are useful for usability hypothesis generation. Lastly, our 90Second delivery approach can generate information useful for a set of similar products (eg, weekly health letters targeted towards other conditions/populations). UR - https://formative.jmir.org/2020/2/e14496 UR - http://dx.doi.org/10.2196/14496 UR - http://www.ncbi.nlm.nih.gov/pubmed/32049064 ID - info:doi/10.2196/14496 ER - TY - JOUR AU - Kedroske, Jacob AU - Koblick, Sarah AU - Chaar, Dima AU - Mazzoli, Amanda AU - O'Brien, Maureen AU - Yahng, Lilian AU - Vue, Rebecca AU - Chappell, Grant AU - Shin, Youn Ji AU - Hanauer, A. David AU - Choi, Won Sung PY - 2020/1/23 TI - Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing JO - JMIR Form Res SP - e17077 VL - 4 IS - 1 KW - hematopoietic stem cell transplantation KW - caregivers KW - mobile applications KW - qualitative research N2 - Background: Roadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial. Objective: This study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0. Methods: We conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (?18 years) of patients who had undergone HSCT. Results: Most participants were female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), employed at least part time (6/10, 60%), caregivers of adult patients (7/10, 70%), and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, ?NA?) or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items. Conclusions: This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process?(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding?by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.49188 UR - http://formative.jmir.org/2020/1/e17077/ UR - http://dx.doi.org/10.2196/17077 UR - http://www.ncbi.nlm.nih.gov/pubmed/32012037 ID - info:doi/10.2196/17077 ER - TY - JOUR AU - Chaar, Dima AU - Shin, Youn Ji AU - Mazzoli, Amanda AU - Vue, Rebecca AU - Kedroske, Jacob AU - Chappell, Grant AU - Hanauer, A. David AU - Barton, Debra AU - Hassett, L. Afton AU - Choi, Won Sung PY - 2019/10/24 TI - A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations JO - JMIR Mhealth Uhealth SP - e15775 VL - 7 IS - 10 KW - caregivers KW - allogeneic hematopoietic stem cell transplant KW - home interviews KW - user experience KW - mobile health apps N2 - Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver?facing tool to provide informational needs about the health status of patients undergoing inpatient HCT. Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0). Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants? homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection. Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one?s own needs with the patient?s needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a ?menu? of positive activities to help support caregiver health and well-being. Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.4918 UR - http://mhealth.jmir.org/2019/10/e15775/ UR - http://dx.doi.org/10.2196/15775 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651402 ID - info:doi/10.2196/15775 ER - TY - JOUR AU - Quinn, C. Charlene AU - Staub, Sheila AU - Barr, Erik AU - Gruber-Baldini, Ann PY - 2019/05/23 TI - Mobile Support for Older Adults and Their Caregivers: Dyad Usability Study JO - JMIR Aging SP - e12276 VL - 2 IS - 1 KW - older adult KW - caregiver KW - mobile health KW - patient engagement N2 - Background: Evaluation of digital health applications to support older adults? independence and family caregiving is needed. Digital health is increasingly providing opportunities for older adults and their family caregivers to educate, engage, and share health information across digital platforms. Few apps have documented evidence of usability by older adults and their caregivers. Objective: The objective of this study was to determine the usability of a mobile app in a community-based older adult population aged ?65 years. The app was designed to improve engagement of the patient-informal caregiver team. Methods: This observational usability study was conducted in participants? homes and independent living facilities in Baltimore, Maryland. Community-dwelling older adults aged ?65 years and their caregivers enrolled as a dyad (n=24, 12 dyads). The usability evaluation was a mobile and Web-based app that allowed older adult users to record social and health information and share this information with their caregivers. The older adult-caregiver dyad downloaded the app to a smart phone or accessed the Web version, participated in training and onboarding, and used the app for a 1-month period. Participants responded to weekly surveys sent by app push notifications and to the usability and satisfaction surveys at the end of the study. Participant satisfaction and usability were assessed using the Modified Mobile Application Rating Scale (M-MARS) and the System Usability Scale (SUS). Results: The final sample comprised 16 people (8 dyads). Responses to the M-MARS were comparable between older adults and caregiver respondents in terms of engagement and functionality. Caregivers rated aesthetics slightly higher (mean 3.7) than older adult participants did (mean 3.3). Although most responses to the SUS were around the mean (2.3-3.4), older adults and their caregivers differed with regard to integration of app features (mean 3.7 vs 2.8) and the need to learn more before using the app (mean 2.3 vs 3.1). Conclusions: Technology ownership and use among older adults and caregivers was high. Usability and engagement of the mobile app was average. Additional training is recommended for older adults and their caregivers, including that on targeted behaviors for digital health record keeping. UR - http://aging.jmir.org/2019/1/e12276/ UR - http://dx.doi.org/10.2196/12276 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518271 ID - info:doi/10.2196/12276 ER - TY - JOUR AU - Carr, L. Alaina AU - Jones, Jacqueline AU - Mikulich Gilbertson, Susan AU - Laudenslager, L. Mark AU - Kutner, S. Jean AU - Kilbourn, Kristin AU - Sannes, S. Timothy AU - Brewer, W. Benjamin AU - Kolva, Elissa AU - Joshi, Tanisha AU - Amoyal Pensak, Nicole PY - 2019/05/03 TI - Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study JO - JMIR Cancer SP - e11406 VL - 5 IS - 1 KW - advanced cancer caregivers KW - psychoeducation KW - mHealth KW - cancer KW - bone marrow transplantation KW - qualitative research KW - internet KW - randomized controlled trial KW - caregivers KW - neoplasms KW - telemedicine KW - clinical trial, phase I N2 - Background: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. Objective: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. Methods: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. Results: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. Conclusions: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. Trial Registration: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei) UR - http://cancer.jmir.org/2019/1/e11406/ UR - http://dx.doi.org/10.2196/11406 UR - http://www.ncbi.nlm.nih.gov/pubmed/31066678 ID - info:doi/10.2196/11406 ER - TY - JOUR AU - Heynsbergh, Natalie AU - Heckel, Leila AU - Botti, Mari AU - O, Chul Seung AU - Livingston, M. Patricia PY - 2019/04/11 TI - Development of a Smartphone App for Informal Carers of People With Cancer: Processes and Learnings JO - JMIR Form Res SP - e10990 VL - 3 IS - 2 KW - cancer KW - carer KW - smartphone KW - mobile applications KW - technology N2 - Background: There are few support systems available to informal carers who provide care to cancer patients. Smartphone apps have the capacity to reach large audiences and can provide information and support at a time convenient to carers. Objective: The aim of this study was to design a smartphone app prototype for carers of adults with cancer. Methods: A multiple-method design was used to develop a smartphone app. Current and past carers of people with any type of cancer were recruited from a public hospital, a private hospital, and a carer organization, who participated in either a focus group or phone interview. Carers answered questions about items to include in an app to address supportive care needs identified. Using carers? feedback, a smartphone app was designed and tested. Beta testing was conducted using a convenience sample of participants who completed scenarios to inform the app?s design, functionality, and usability. Scenarios were timed and marked as complete or incomplete. Participants completed a questionnaire about the usability of the app. Beta testing occurred in 2 stages?a paper-based version of the app and an app-based test using the participants? preferred device. Alpha testing was completed internally to ensure the functionality of the app. Data were collected between May 2016 and August 2017. Results: A total of 33 carers participated in phone interviews and 12 in focus groups; their average age was 55 (SD 14) years, and 60% (27/45) were female. The majority of carers (76%, 25/33) had a positive attitude toward using smartphone apps. Carers noted that smartphone technology might improve their ability to seek information and support in managing their own health as well as the care needs of the person with cancer. Carers requested a variety of information and resources to be included in the app. Paper-based testing included the following: participants (N=10) were aged above 30 years (30%, 3/10), 30 to 49 years (30%, 3/10), and 50 years or above (40%, 4/10), and 60% (6/10) were male. Participants found the app user-friendly and pleasing in appearance. App-based testing included the following: participants (N=10) were aged above 30 years (20%, 2/10), 30 to 49 years (30%, 3/10), and 50 years or above (50%, 5/10), and 50% (5/10) were male. Participants reported the app to be user-friendly and easy to navigate. The majority (60%, 6/10) of participants were unable to create a shortcut icon to add the app to the home screen of their phone. Conclusions: Carers highlighted the needed information and support to assist them during the caring period; they also reported having a positive attitude toward smartphone apps. The Carer Guide App is currently undergoing a pilot study to further test usability among carers of people with 1 cancer type. UR - http://formative.jmir.org/2019/2/e10990/ UR - http://dx.doi.org/10.2196/10990 UR - http://www.ncbi.nlm.nih.gov/pubmed/30973346 ID - info:doi/10.2196/10990 ER - TY - JOUR AU - Heynsbergh, Natalie AU - Heckel, Leila AU - Botti, Mari AU - Livingston, M. Patricia PY - 2019/01/31 TI - A Smartphone App to Support Carers of People Living With Cancer: A Feasibility and Usability Study JO - JMIR Cancer SP - e11779 VL - 5 IS - 1 KW - cancer KW - carer KW - mobile app KW - smartphone KW - technology KW - mobile phone N2 - Background: Carers experience unique needs while caring for someone with cancer. Interventions that address carers? needs and well-being have been developed and tested; however, the use of smartphone apps to support adult carers looking after another adult with cancer has not been assessed. Objective: The objective of this study was to test the feasibility, usability, and acceptability of a smartphone app, called the Carer Guide App, for carers of people with colorectal cancer. Methods: We recruited carers of people with colorectal cancer from outpatient day oncology units and provided them with access to the smartphone app for 30 days. Carers had access to video instructions and email contact details for technical support. Carers received 2 email messages per week that directed them to resources available within the app. Carers completed demographic questions at baseline and questions related to feasibility and usability at 30 days post app download. We used recruitment and attrition rates to determine feasibility and relevance of content to carers? needs as self-reported by carers. We assessed usability through the ease of navigation and design and use of technical support or instructional videos. Acceptability was measured through self-reported usage, usage statistics provided by Google Analytics, and comments for improvement. Results: We recruited 31% (26/85) eligible carers into the trial. Of the 26 carers, the majority were female (19, 73%), on average 57 years of age, were caring for a spouse with cancer (19, 73%), and held a university degree (19, 73%). Regarding feasibility, carers perceived the content of the Carer Guide App as relevant to the information they were seeking. Regarding usability, carers perceived the navigation and design of the app as easy to use. Of the 26 carers, 4 (15%) viewed the downloading and navigation video and 7 (27%) used the contact email address for queries and comments. Acceptability: On average, carers used the smartphone app for 22 minutes (SD 21 minutes) over the 30-day trial. Of 26 participants, 19 completed a follow-up questionnaire. Of 19 carers, 7 (37%) logged on 3 to 4 times during the 30 days and 5 (26%) logged on more than 5 times. The majority (16/19, 84%) of carers stated that they would recommend the app be available for all carers. Comments for improvement included individualized requests for specific content. Conclusions: The Carer Guide App was feasible and usable among carers of people with colorectal cancer. Acceptability can be improved through the inclusion of a variety of information and resources. A randomized controlled trial is required to assess the impact of the Carer Guide App on carers? health and well-being. UR - http://cancer.jmir.org/2019/1/e11779/ UR - http://dx.doi.org/10.2196/11779 UR - http://www.ncbi.nlm.nih.gov/pubmed/30702432 ID - info:doi/10.2196/11779 ER -