Dataset Information

Are cancer helplines effective in supporting caregivers? A systematic review.

ABSTRACT:

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.

SUBMITTER: Heckel L

PROVIDER: S-EPMC6660576 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Publications

Are cancer helplines effective in supporting caregivers? A systematic review.

Heckel Leila L Heynsbergh Natalie L NL Livingston Patricia M PM

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20190516 9

<h4>Purpose</h4>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.<h4>Methods</h4>Four electronic databases (Medline, CINAHL, PsychINFO, and EMBASE) were systematically searched to identify relevant literature, including al ...[more]

PMID: 31098794

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Project description:ImportanceWhen caregivers cannot attend the clinic visit for the person they provide care for, patients are the predominant source of clinic visit information; however, poor patient recall inhibits the quality of information shared, resulting in poor caregiver preparedness and contributing to caregiver morbidity. Technological solutions exist to sharing clinic visit information, but their effectiveness is unclear.ObjectivesTo assess if and how technology is being used to connect informal caregivers to patient clinic visit information when they cannot otherwise attend, and its impact on caregiver and patient outcomes.Evidence reviewMEDLINE, Cochrane, Scopus, and CINAHL were searched through 5/3/2020 with no language restrictions or limits. ClinicalTrials.gov and other reference lists were included in the search. Randomized controlled trials (RCTs) and nonrandomized trials that involved using a technological medium e.g., video or the electronic health record, to communicate visit information to a non-attending caregiver were included. Data were collected and screened using a standardized data collection form. Cochrane's Risk of Bias 2.0 and the Newcastle-Ottawa Scale were used for RCTs and nonrandomized trials, respectively. All data were abstracted by two independent reviewers, with disagreements resolved by a third reviewer.FindingsOf 2115 studies identified in the search, four met criteria for inclusion. Two studies were randomized controlled trials and two were nonrandomized trials. All four studies found positive effects of their intervention on caregiver outcomes of interest, and three out of four studies found statistically significant improvements in key outcomes for caregivers receiving visit information. Improved outcomes included caregiver happiness, caregiver activation, caregiver preparedness, and caregiver confidence in managing patient health.Conclusions and relevanceOur review suggests that using technology to give a caregiver access to clinical visit information could be beneficial to various caregiver outcomes. There is an urgent need to address the lack of research in this area.

Project description:BackgroundUpper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown. This systematic review of qualitative studies synthesises and critically evaluates the current evidence base on the experience of informal caregivers of individuals with UGIC.MethodsA Joanna Briggs Institute systematic review was conducted. Searches were performed in four databases (MEDLINE, PsycINFO, Embase, CINAHL) from database inception to February 2021. Included studies explored experiences of informal caregivers of individuals diagnosed with primary cancer of the oesophagus, stomach, pancreas, bile duct, gallbladder, or liver. Studies were independently screened for eligibility and included studies were appraised for quality by two reviewers. Data were extracted and synthesised using meta-aggregation.Results19 papers were included in this review, and 328 findings were extracted. These were aggregated into 16 categories across three findings: (1) UGIC caregiver burden; UGIC caregivers undertake extensive responsibilities, especially around patient diet as digestion is severely impacted by UGICs. (2) Mediators of caregiver burden; The nature of UGICs, characterised by disruptive life changes for caregivers, was identified as a mediator for caregiver burden. (3) Consequences of caregiver burden: UGIC caregivers' experiences were shaped by unmet needs, a lack of information and a general decline in social interaction.ConclusionsThe findings of this review suggest the need for a cultural shift within health services. Caregiving for UGIC patients is suggested to adversely affect caregivers' quality of life, similarly to other cancer caregiving populations and therefore they should be better incorporated as co-clients in care-planning and execution by including them in discussions about the patient's diagnosis, treatment options, and potential side effects.

Project description:BackgroundCaring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support.ObjectiveIn this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia.MethodsWe conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools.ResultsWe identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain.ConclusionsAlthough mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

Project description:IntroductionAs the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment.Methods and analysisGiven the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.Ethics and disseminationBy adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

Project description:BackgroundThe number of published studies and systematic reviews examining different telehealth interventions targeting patients and their effects on patients' well-being and quality of life have grown in recent decades. However, the use of telemedicine tools aimed at the family members and caregivers of adult cancer patients is less defined.ObjectiveWe aimed to conduct a systematic review to provide a more complete picture regarding telemedicine tools for informal caregivers (usually family members or close friends) implemented in all phases of cancer care. More specifically, the review aimed to better describe the study samples' characteristics, to analyze measured outcomes and the specific questionnaires used to assess them, and to describe in depth the implemented interventions and their formats. Finally, we examined the role of telehealth, and usability and feasibility trends in supporting patients' caregivers.MethodsWe systematically searched the literature in the following databases: Web of Science, Cochrane Library, PubMed, Scopus, CINAHL, MEDLINE, EMBASE, Google Scholar, and PsycINFO. Inclusion criteria were being written in English, published in peer-reviewed journals, describing a telehealth-implemented intervention, and focusing on caregivers of adult cancer patients at any stage of the disease. We selected studies published up to November 2017. We critically appraised included articles using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and graded the quality of evidence by outcome using the Centre for Evidence-Based Medicine framework.ResultsWe included 24 studies in the final selection. In 21 of the 24 studies, the patient-caregiver dyad was analyzed, and the study population dealt with different types of cancer at different stages. Included studies considered the caregiver's condition from both an individual and a relational point of view. Along with psychosocial variables, some studies monitored engagement and user satisfaction regarding Web-based platforms or telehealth interventions. All studies reported significant improvements in some of the investigated areas, but they often showed small effect sizes. Two types of telehealth intervention formats were used: Web-based platforms and telephone calls. Some of the included studies referred to the same project, but on study samples with different cancer diagnoses or with new versions of previously developed interventions.ConclusionsReported outcomes seem to suggest that we are in an exploratory phase. More detailed and targeted research hypotheses are still needed. Clarifying caregivers' needs related to telehealth tools and better defining outcome measures may yield more significant results.

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Dataset Information

Are cancer helplines effective in supporting caregivers? A systematic review.

Purpose

Methods

Results

Conclusions

Publications

Are cancer helplines effective in supporting caregivers? A systematic review.

Similar Datasets

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