Information Systems and Healthcare XXVIII: The Information Needs of Family Carers in Collaborative Healthcare

Nguyen, Lemai; Shanks, Graeme; Vetere, Frank; Howard, Steve

doi:10.17705/1cais.02310

Cited by 5 publications

(18 citation statements)

References 26 publications

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“…The distributed sources of emotional and informational support are significant. Those who receive the same information from multiple sources are more likely to trust that information (Griffiths et al, 2012; Long et al, 2017; McKinlay, 1973; Nguyen & Shanks, 2007), and repeated advice is more likely to be valuable when the network is relatively heterogenous and the information is from non‐similar sources (Lee & Miller, 1969).…”

Section: Discussionmentioning

confidence: 99%

“…For example, a pregnant woman is more likely to ask her mother for advice, rather than a spouse who has no experience with pregnancies or children (McKinlay, 1973). In turn, an individual's contribution of social capital depends on their motivations and interests (Arazy et al, 2017), and a network must have a mix of strong and weak ties to other networks to ensure lasting change (Woolcock & Narayan, 2000), which in healthcare translates to a mix of professional, institutional and carer perspectives (Nguyen & Shanks, 2007; Øydgard, 2017).…”

Section: Introductionmentioning

confidence: 99%

“…Lack of medical knowledge and experience can also be frustrating and isolating for carers (Long et al, 2017; Øydgard, 2017). As a carer's informational needs change over time, informational support must be ongoing and nuanced to these needs (Nguyen & Shanks, 2007). While support services provide practical assistance, research also attests to the importance of peer networks.…”

Section: Introductionmentioning

confidence: 99%

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Supporting carers in online role‐diverse communities: A case study in Australia

Velmurugan

Watson

Obst

et al. 2022

Health Social Care Comm

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This study aims to understand the effects that role‐diverse online communities have on informal carers, particularly in providing support. Australian Facebook communities used to support those involved in the National Disability Insurance Scheme (NDIS) were explored. Social network analysis of an NDIS‐centred community was conducted, based on 909 publicly visible interactions that occurred in May–June and August–September 2019. Two managers of informal NDIS communities were interviewed, the transcripts of which were analysed using NVivo. Results from the two analyses suggest that both an individual carer's attributes and the collective attributes of the network defined the capability of the network to support the carer, often depending on the experiences and expertise of those offering support. Support was unconstrained by role, though differing goals and expectations often impeded collaboration between roles. The outcomes of support provision were shown to affect not only individuals but also the collective network. However, while effective, community spaces currently lack organisational backing and resources available to informal communities are constrained. Findings drawn from this study, which we believe are applicable to a broader, international context, are three‐fold. Firstly, it is recommended that informal support communities clearly define purpose and create multiple channels to ensure that all participants can meet their needs. Secondly, the benefits of participation to organisations should be further explored. Finally, the use of social network analysis as a method in this study has provided significant insights into the communication patterns and activities of the community under study. Future use of SNA in similar studies may provide further insight into the effectiveness and interactions of community‐based support methods.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Supporting carers in online role‐diverse communities: A case study in Australia

Velmurugan

Watson

Obst

et al. 2022

Health Social Care Comm

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“…In the health-care sector, Nguyen et al (2008) analysed an extensive online diary of a Vietnamese family carer supporting his wife and suggested a four-stage information journey model consisting of identification, searching, interpretation and information sharing and collaboration.…”

Section: Research On Information Journeymentioning

confidence: 99%

Supporting the information journey of students with disabilities through accessible learning materials

Nganji

2018

ILS

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Purpose This paper aims to suggest how the information journey of students with disabilities could be facilitated, by first revealing the existence of inaccessible formats such as Portable Document Format (PDF) and then suggesting the inclusion of alternative formats of accessible learning materials, thus improving retrieval. Design/methodology/approach A sample of 400 articles published over 10 years (2009-2018) from four journals are selected and analysed for accessibility against the Web Content Accessibility Guidelines WCAG 2.0 by using automated accessibility checkers, a screen reader and manual human expertise. The results are presented and recommendations made on improving accessibility. Findings The findings suggest that the PDF versions of the selected journal articles are not accessible for screen reader users but could be improved by adopting accessible and inclusive practices. Including alternative formats of the learning materials could help support the student information journey. Research limitations/implications The results of the study might not be very representative of all the articles in the journals given the small sample size. Additionally, the criteria used in the study do not consider all existing disabilities. Thus, although the PDFs may be inaccessible for some people with disabilities, they may be accessible to others. Practical implications Given that PDFs seem to be the preferred format of journal articles online, there is potential for a difficult information journey for some students due to the limitations posed by inaccessibility of the PDFs. Thus, it is recommended to include alternative formats which could be more accessible, giving the student the choice of accessing the learning materials in their preferred format. Social implications If students are unable to access the learning materials that are required for their course, this could lead to poor grade, which might negatively affect the students’ morale. In some cases, some students might drop out. Originality/value This study analyses the accessibility of learning materials provided by a third party (journal publishers) and how they affect the student, something that is not usually given much importance when research in accessibility is carried out.

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“…Payton and Kiwanuka-Tondo (2009) looked at HIV/AIDS pandemic among black women in terms of the spirit communicated to this population by a principal government health care web site. Nguyen et al (2008) suggested a fourstage information journey model for a family care giver including: identification, searching, interpretation and information sharing, and collaboration. Among the themes that emerged from the study were: the key role of the care giver, information filtering by the carer, information sharing and collaboration, and the influence of national culture.…”

Section: Literature Review Health Information Literature In Is Researchmentioning

confidence: 99%

Socio-economic influences on health information searching in the USA: the case of diabetes

Morgan

Trauth

2013

Information Technology &Amp; People

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2014),"Why do people stick to Facebook web site? A value theorybased view", Information Technology & People, Vol. 27 Iss 1 pp. 21-37 http://dx.If you would like to write for this, or any other Emerald publication, then please use our Emerald for Authors service information about how to choose which publication to write for and submission guidelines are available for all. Please visit www.emeraldinsight.com/authors for more information. About Emerald www.emeraldinsight.comEmerald is a global publisher linking research and practice to the benefit of society. The company manages a portfolio of more than 290 journals and over 2,350 books and book series volumes, as well as providing an extensive range of online products and additional customer resources and services.Emerald is both COUNTER 4 and TRANSFER compliant. The organization is a partner of the Committee on Publication Ethics (COPE) and also works with Portico and the LOCKSS initiative for digital archive preservation. AbstractPurpose -The purpose of this paper is to consider the effect of demographic differences on the motivations and abilities of individuals with diabetes in their search for health information online. Using data gathered from a qualitative study of 30 individuals, the paper examined instances of user-based health motivation and abilities using the lens of demographic differences to identify the influence on health information searching and potential health outcomes. Design/methodology/approach -The paper utilized an interpretive, mixed methodology research design. The paper was composed of a user "experience" that served as a critical incident to the paper, where each participant was prompted to do online searching for health and nutrition information. This was followed by open-ended interviews to gain a deeper understanding of each participants' online searching experience. Findings -The theoretical model used was the Integrated Model of E-Health Use by Dutta-Bergman (2006) which frames the influence of group and individual-level differences on health informationsearch and e-health use and subsequently health outcomes. The paper found that experiences among diabetic patients who have an assumed intrinsic motivation to search have differential searching behaviors due to a number of factors including access to health care provider or resources, searching success, and significant people in the individuals' lives. Assumptions about race and socioeconomic status are challenged because of the geographic location in which people live and work. Research limitations/implications -This research on intersectionality and the health information consumer contributes to a better understanding of health information searching behavior. Implications from this research for practice are that search technology in the domain of health should be made customizable, that a variety of user perspectives should be incorporated in the e-health systems development process, and that a comprehensive view of the user in system development should be utilized. In additio...

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Information Systems and Healthcare XXVIII: The Information Needs of Family Carers in Collaborative Healthcare

Cited by 5 publications

References 26 publications

Supporting carers in online role‐diverse communities: A case study in Australia

Supporting carers in online role‐diverse communities: A case study in Australia

Supporting the information journey of students with disabilities through accessible learning materials

Socio-economic influences on health information searching in the USA: the case of diabetes

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