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PURPOSE: The aims of this systematic review were to summarize the profile of caregivers accessing cancer helplines, to evaluate caregiver satisfaction with the helpline service, and to review the evidence base of intervention studies testing the efficacy of community-based cancer helplines in improving caregiver health and well-being. METHODS: Four electronic databases (Medline, CINAHL, PsychINFO, and EMBASE) were systematically searched to identify relevant literature, including all articles published in English until May 2018. Reference lists of accepted papers were reviewed for the inclusion of additional potentially relevant articles, gray literature was excluded. RESULTS: Forty-five publications met the inclusion criteria for this review. Forty-one papers reported on the proportion of caregivers accessing cancer helplines. Twenty-six studies described demographic and clinical characteristics of caregivers and eight reported on call characteristics. Reasons for contacting the service were stated in 21 studies and caregiver satisfaction with the helpline service was assessed in 12 articles. Fourteen studies investigated specific topics of interest (e.g., prevalence of sleep problems, distress screening, or clinical trial participation). Two randomized controlled trials examined the efficacy of cancer helplines in improving caregiver outcomes, with findings showing interventions to be effective in reducing distress and unmet needs, and in increasing positive adjustment. CONCLUSIONS: There is limited scientific evidence regarding the efficacy of cancer helplines to improve caregivers' health and well-being. More intervention studies are needed to examine the benefits of cancer helplines to this study population to ensure structured referral pathways can be established.
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Cuidadores/psicologia , Linhas Diretas/métodos , Neoplasias/psicologia , Sistemas de Apoio Psicossocial , Apoio Social , HumanosRESUMO
PURPOSE: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs. METHODS: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs. RESULTS: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed. CONCLUSIONS: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.
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Cuidadores/psicologia , Neoplasias/reabilitação , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Apoio Social , Adulto JovemRESUMO
BACKGROUND: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. METHODS: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers' perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. RESULTS: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. CONCLUSIONS: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.
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Cuidadores , Aplicativos Móveis , Neoplasias/terapia , Qualidade de Vida , Telemedicina/métodos , Adulto , Humanos , Projetos PilotoRESUMO
OBJECTIVE: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory. METHODS: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews. RESULTS: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs. CONCLUSIONS: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.
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Atitude Frente a Saúde , Cuidadores/psicologia , Informação de Saúde ao Consumidor , Disseminação de Informação , Neoplasias/psicologia , Apoio Social , Comunicação , Empatia , Feminino , Humanos , Internet , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: The study sought to review the different assessment items that have been used within existing health app evaluation frameworks aimed at individual, clinician, or organizational users, and to analyze the scoring and evaluation methods used in these frameworks. MATERIALS AND METHODS: We searched multiple bibliographic databases and conducted backward searches of reference lists, using search terms that were synonyms of "health apps," "evaluation," and "frameworks." The review covered publications from 2011 to April 2020. Studies on health app evaluation frameworks and studies that elaborated on the scaling and scoring mechanisms applied in such frameworks were included. RESULTS: Ten common domains were identified across general health app evaluation frameworks. A list of 430 assessment criteria was compiled across 97 identified studies. The most frequently used scaling mechanism was a 5-point Likert scale. Most studies have adopted summary statistics to generate the total scoring of each app, and the most popular approach taken was the calculation of mean or average scores. Other frameworks did not use any scaling or scoring mechanism and adopted criteria-based, pictorial, or descriptive approaches, or "threshold" filter. DISCUSSION: There is wide variance in the approaches to evaluating health apps within published frameworks, and this variance leads to ongoing uncertainty in how to evaluate health apps. CONCLUSIONS: A new evaluation framework is needed that can integrate the full range of evaluative criteria within one structure, and provide summative guidance on health app rating, to support individual app users, clinicians, and health organizations in choosing or recommending the best health app.
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Aplicativos Móveis , Telemedicina , Publicações , Projetos de PesquisaRESUMO
PURPOSE: Family members are a part of the team to improve the outcomes of the person with cancer. Families require support and information to optimise their care, however, their needs are often unacknowledged and within clinical areas there is a lack of family focused interventions. Studies highlight families' needs but lack a family representation. The aim was to explore research with family as the unit-of-care during cancer treatment. METHOD: The Pickering systematic quantitative literature review method; a 15-step process from searching, database development and analysis was followed. Research published 2008-2019 within databases: MEDLINE, SCOPUS, PsycINFO, Cochrane, CINAHL; key words, 'family* or caregiver*, and cancer*, neoplasm* and coping*, distress* in November 2019. Quality assessment completed using Mixed Methods Appraisal Tool, descriptive quantitative analysis and thematic analysis. RESULTS: Studies involving patients and family members were included in the review (N = 73). The analysis identified participants had a mean age of 58 years and primarily lung, breast or prostate cancer. Over 80% were from America and European countries; 93% had a dyad sample, quantitative studies (76%). There was eight intervention studies between four to sixteen weeks long, focused on family wellbeing. Themes described the impact of cancer on the whole family, the importance of communication between family members, and resources for family members. CONCLUSION: The review identified four main scales and optimum intervention styles. Family research in the adult cancer needs to focus on intervention studies, increase international focus and inclusion of other family members such as children, friends and older adults.
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Adaptação Psicológica , Cuidadores/psicologia , Enfermagem Familiar/organização & administração , Família/psicologia , Neoplasias/enfermagem , Neoplasias/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: To compare patient booklets with clinical guidelines and care pathways to assess: gaps in content and depth of information delivered, opportunities for patients participation and to review the trajectory of care to inform recovery. METHODS: A systematic review of the grey literature was conducted using Google search engine and a variety of terms related to cardiac surgery, patient outcomes and recovery pathways. Patient books and care pathways were obtained from major hospitals in Melbourne. Resources were included if they were published between January 2013-August 2018 and written in English. RESULTS: A total of 31 resources were included in the review, (nâ¯=â¯14 patient booklets, nâ¯=â¯17 clinician guides). Twenty-one topics of recovery were identified. Patient booklets provided information on more topics of recovery than clinician guides (50 % and 24 % respectively). Clinician guides provided more depth on information on topics of recovery than patient booklets (85 % and 73 % respectively). The majority of patient booklets outlined patient participation was in five topics of recovery. CONCLUSIONS: Gaps in the type and depth of information exist between patient and clinician guidelines. Clearer guidelines on how patients can participate in care are needed. PRACTICE IMPLICATIONS: Nurses are key drivers in facilitating patient participation in postoperative recovery.
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Procedimentos Cirúrgicos Cardíacos , Participação do Paciente , Cuidados Pós-Operatórios , Hospitais , Humanos , Narração , FolhetosRESUMO
BACKGROUND: Multimedia interventions can provide a cost-effective solution to public health needs; however, user engagement is low. Multimedia use within specific populations such as those affected by cancer differs from that of the general population. To our knowledge, there are no frameworks on how to accurately assess usage within this population to ensure that interventions are appropriate for the end users. Therefore, a framework was developed to improve the accuracy of determining data usage. Formative work included creating a data usage framework during target audience testing for smartphone app development and analysis in a pilot study. OBJECTIVE: The purpose of this study was to develop a framework for assessing smartphone app usage among people living with cancer and their caregivers. METHODS: The frequency and duration of use were compared based on manual data extraction from two previous studies and the newly developed Assessment of Data Usage of Cancer e-Interventions (ADUCI) Framework. RESULTS: Manual extraction demonstrated that 279 logins occurred compared with 241 when the ADUCI Framework was applied. The frequency of use in each section of the app also decreased when the ADUCI Framework was used. The total duration of use was 91,256 seconds (25.3 hours) compared with 53,074 seconds (14.7 hours) when using the ADUCI Framework. The ADUCI Framework identified 38 logins with no navigation, and there were 15 discrepancies in the data where time on a specific page of the app exceeded the login time. Practice recommendations to improve user engagement and capturing usage data include tracking data use in external websites, having a login function on apps, creating a five-star page rating functionality, using the ADUCI Framework to thoroughly clean usage data, and validating the Framework between expected and observed use. CONCLUSIONS: Applying the ADUCI Framework may eliminate errors and allow for more accurate analysis of usage data in e-research projects. The Framework can also improve the process of capturing usage data by providing a guide for usage data analysis to facilitate evidence-based assessment of user engagement with apps.
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BACKGROUND: Smartphone technology represents an opportunity to deliver practical solutions for people affected by cancer at a scale that was previously unimaginable, such as information, appointment monitoring, and improved access to cancer support services. This study aimed to determine whether a smartphone application (app) reduced the unmet needs among people newly diagnosed with cancer. METHODS: A single blind, multisite randomized controlled trial to determine the impact of an app-based, 4-month intervention. Newly diagnosed cancer patients were approached at three health service treatment clinics. RESULTS: Eighty-two people were randomized (intervention; n = 43 and control; n = 39), average age was 59.5 years (SD: 12.9); 71% female; 67% married or in a de facto relationship. At baseline, there were no differences in participants' characteristics between the groups. No significant effects, in reducing unmet needs, were demonstrated at the end of intervention (4-month) or 12-month follow-up. Overall, 94% used the app in weeks 1-4, which decreased to 41% in weeks 13-16. Mean app use time per participant: Cancer Information, 6.9 (SD: 18.9) minutes; Appointment Schedule, 5.1 (SD: 9.6) minutes; Cancer Services 1.5 minutes (SD: 6.8); Hospital Navigation, 1.4 (SD: 2.8) minutes. CONCLUSIONS: Despite consumer involvement in the design of this smartphone technology, the app did not reduce unmet needs. This may have been due to the study being underpowered. To contribute to a meaningful understanding and improved implementation of smartphone technology to support people affected by cancer, practical considerations, such as recruitment issues and access to, and confidence with, apps, need to be considered. Australian New Zealand Clinical Trials Registration (ACTRN) Trial Registration: 12616001251415; WEF 7/9/2016.
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Aplicativos Móveis/estatística & dados numéricos , Neoplasias/prevenção & controle , Smartphone/estatística & dados numéricos , Telemedicina/métodos , Austrália/epidemiologia , Estudos de Casos e Controles , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Prognóstico , Método Simples-CegoRESUMO
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.
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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.