The direct and indirect financial costs of informal cancer care: A scoping review.

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver-reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs' opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.

Coumoundouros C ，Ould Brahim L ，Lambert SD ，McCusker J ... -  《-》

Erratum: Eyestalk Ablation to Increase Ovarian Maturation in Mud Crabs.

《Jove-Journal of Visualized Experiments》

Out-of-pocket expenses related to aging in place for frail older people: a scoping review.

The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with frailty and their caregivers. As the global population ages, there has been increasing attention on supporting older people to live at home in the community as they experience health and functional changes. Older people with frailty often require a variety of supports and services to live in the community, yet the out-of-pockets costs associated with these resources are often not accounted for in health and social care literature. Sources that reported on the financial expenses incurred by older people (60 years or older) with frailty living in the community, or on the expenses incurred by their family and friend caregivers, were eligible for inclusion in the review. We searched for published and unpublished (ie, policy papers, theses, and dissertations) studies written in English or French between 2001 and 2019. The following databases were searched: CINAHL, MEDLINE, Scopus, Embase, PsycINFO, Sociological Abstracts, and Public Affairs Index. We also searched for gray literature in a selection of websites and digital repositories. JBI scoping review methodology was used, and we consulted with a patient and family advisory group to support the relevance of the review. A total of 42 sources were included in the review, including two policy papers and 40 research papers. The majority of the papers were from the United States (n = 18), with others from Canada (n = 6), the United Kingdom (n = 3), Japan (n = 2), and one each from Australia, Brazil, China, Denmark, Israel, Italy, The Netherlands, Poland, Portugal, Singapore, South Korea, Taiwan, and Turkey. The included research studies used various research designs, including cross-sectional (n = 18), qualitative (n = 15), randomized controlled trials (n = 2), longitudinal (n = 2), cost effectiveness (n = 1), quasi-experimental (n = 1), and mixed methods (n = 1). The included sources used the term "frailty" inconsistently and used various methods to demonstrate frailty. Categories of out-of-pocket expenses found in the literature included home care, medication, cleaning and laundry, food, transportation, medical equipment, respite, assistive devices, home modifications, and insurance. Five sources reported on out-of-pocket expenses associated with people who were frail and had dementia, and seven reported on the out-of-pocket expenses for caregivers of people with frailty. While seven articles reported on specific programs, there was very little consistency in how out-of-pocket expenses were used as outcome measures. Several studies used measures of combined out-of-pocket expenses, but there was no standard approach to reporting aggregate out-of-pocket expenses. Contextual factors are important to the experiences of out-of-pocket spending for older people with frailty. There is a need to develop a standardized approach to measuring out-of-pocket expenses in order to support further synthesis of the literature. We suggest a measure of out-of-pocket spending as a percentage of family income. The review supports education for health care providers to assess the out-of-pocket spending of community-dwelling older people with frailty and their caregivers. Health care providers should also be aware of the local policies and resources that are available to help older people with frailty address their out-of-pocket spending.

Moody E ，Ganann R ，Martin-Misener R ，Ploeg J ，Macdonald M ，Weeks LE ，Orr E ，McKibbon S ，Jefferies K ... -  《-》

The effectiveness of school-based family asthma educational programs on the quality of life and number of asthma exacerbations of children aged five to 18 years diagnosed with asthma: a systematic review protocol.

Walter H ，Sadeque-Iqbal F ，Ulysse R ，Castillo D ，Fitzpatrick A ，Singleton J ... -  《-》

Healthcare workers' informal uses of mobile phones and other mobile devices to support their work: a qualitative evidence synthesis.

Healthcare workers sometimes develop their own informal solutions to deliver services. One such solution is to use their personal mobile phones or other mobile devices in ways that are unregulated by their workplace. This can help them carry out their work when their workplace lacks functional formal communication and information systems, but it can also lead to new challenges. To explore the views, experiences, and practices of healthcare workers, managers and other professionals working in healthcare services regarding their informal, innovative uses of mobile devices to support their work. We searched MEDLINE, Embase, CINAHL and Scopus on 11 August 2022 for studies published since 2008 in any language. We carried out citation searches and contacted study authors to clarify published information and seek unpublished data. We included qualitative studies and mixed-methods studies with a qualitative component. We included studies that explored healthcare workers' views, experiences, and practices regarding mobile phones and other mobile devices, and that included data about healthcare workers' informal use of these devices for work purposes. We extracted data using an extraction form designed for this synthesis, assessed methodological limitations using predefined criteria, and used a thematic synthesis approach to synthesise the data. We used the 'street-level bureaucrat' concept to apply a conceptual lens to our findings and prepare a line of argument that links these findings. We used the GRADE-CERQual approach to assess our confidence in the review findings and the line-of-argument statements. We collaborated with relevant stakeholders when defining the review scope, interpreting the findings, and developing implications for practice. We included 30 studies in the review, published between 2013 and 2022. The studies were from high-, middle- and low-income countries and covered a range of healthcare settings and healthcare worker cadres. Most described mobile phone use as opposed to other mobile devices, such as tablets. We have moderate to high confidence in the statements in the following line of argument. The healthcare workers in this review, like other 'street-level bureaucrats', face a gap between what is expected of them and the resources available to them. To plug this gap, healthcare workers develop their own strategies, including using their own mobile phones, data and airtime. They also use other personal resources, including their personal time when taking and making calls outside working hours, and their personal networks when contacting others for help and advice. In some settings, healthcare workers' personal phone use, although unregulated, has become a normal part of many work processes. Some healthcare workers therefore experience pressure or expectations from colleagues and managers to use their personal phones. Some also feel driven to use their phones at work and at home because of feelings of obligation towards their patients and colleagues. At best, healthcare workers' use of their personal phones, time and networks helps humanise healthcare. It allows healthcare workers to be more flexible, efficient and responsive to the needs of the patient. It can give patients access to individual healthcare workers rather than generic systems and can help patients keep their sensitive information out of the formal system. It also allows healthcare workers to communicate with each other in more personalised, socially appropriate ways than formal systems allow. All of this can strengthen healthcare workers' relationships with community members and colleagues. However, these informal approaches can also replicate existing social hierarchies and deepen existing inequities among healthcare workers. Personal phone use costs healthcare workers money. This is a particular problem for lower-level healthcare workers and healthcare workers in low-income settings as they are likely to be paid less and may have less access to work phones or compensation. Out-of-hours use may also be more of a burden for lower-level healthcare workers, as they may find it harder to ignore calls when they are at home. Healthcare workers with poor access to electricity and the internet are less able to use informal mobile phone solutions, while healthcare workers who lack skills and training in how to appraise unendorsed online information are likely to struggle to identify trustworthy information. Informal digital channels can help healthcare workers expand their networks. But healthcare workers who rely on personal networks to seek help and advice are at a disadvantage if these networks are weak. Healthcare workers' use of their personal resources can also lead to problems for patients and can benefit some patients more than others. For instance, when healthcare workers store and share patient information on their personal phones, the confidentiality of this information may be broken. In addition, healthcare workers may decide to use their personal resources on some types of patients, but not others. Healthcare workers sometimes describe using their personal phones and their personal time and networks to help patients and clients whom they assess as being particularly in need. These decisions are likely to reflect their own values and ideas, for instance about social equity and patient 'worthiness'. But these may not necessarily reflect the goals, ideals and regulations of the formal healthcare system. Finally, informal mobile phone use plugs gaps in the system but can also weaken the system. The storing and sharing of information on personal phones and through informal channels can represent a 'shadow IT' (information technology) system where information about patient flow, logistics, etc., is not recorded in the formal system. Healthcare workers may also be more distracted at work, for instance, by calls from colleagues and family members or by social media use. Such challenges may be particularly difficult for weak healthcare systems. By finding their own informal solutions to workplace challenges, healthcare workers can be more efficient and more responsive to the needs of patients, colleagues and themselves. But these solutions also have several drawbacks. Efforts to strengthen formal health systems should consider how to retain the benefits of informal solutions and reduce their negative effects.

Glenton C ，Paulsen E ，Agarwal S ，Gopinathan U ，Johansen M ，Kyaddondo D ，Munabi-Babigumira S ，Nabukenya J ，Nakityo I ，Namaganda R ，Namitala J ，Neumark T ，Nsangi A ，Pakenham-Walsh NM ，Rashidian A ，Royston G ，Sewankambo N ，Tamrat T ，Lewin S ... -  《Cochrane Database of Systematic Reviews》