Information seeking amongst informal caregivers of people with dementia: a qualitative study
| DOI | https://doi.org/10.1108/JD-03-2022-0066 |
| Published date | 21 June 2022 |
| Date | 21 June 2022 |
| Pages | 281-300 |
| Subject Matter | Library & information science,Records management & preservation,Document management,Classification & cataloguing,Information behaviour & retrieval,Collection building & management,Scholarly communications/publishing,Information & knowledge management,Information management & governance,Information management,Information & communications technology,Internet |
| Author | Sarah Hargreaves,Laura Sbaffi,Nigel Ford |
Information seeking amongst
informal caregivers of people with
dementia: a qualitative study
Sarah Hargreaves, Laura Sbaffi and Nigel Ford
Information School, The University of Sheffield, Sheffield, UK
Abstract
Purpose –This paper both supports previous findings relating to, and presents new insights into: the
information needs and the information seeking processes of a sample of informal caregivers of people with
dementia (in relation to their own needs and the interrelated needs of the people they are caring for); the extent
to which such information needs are and are not being met; and the factors facilitating and hindering access to
the right information.
Design/methodology/approach –The study adopted a qualitative approach in the form of a thematic
analysis of in-depth, semi-structured interviews with a sample of 20 informal caregivers from a range of
different age groups, genders and caring roles.
Findings –Thematic analysis identified significant informational challenges, with a common perception that
information seeking was onerous, requiring a proactive approach. Further challenges arose from a perceived
lack of focus on carer needs coming up against the boundaries of professional knowledge and inconsistent
information provision across the sample. Distance carers faced specific issues. A second theme of negative
impacts described burdens arising from: difficulties in accessing information from a complex array of support
services closure or change in services and unfulfilled information needs. Participants employed strategies to
enable access to information, for example, being open about their caring role; and building formal or informal
support networks. It is important to address emotional as well as cognitive dimensions of information needs.
Practical implications –This research highlights a need for health and social care, practice and policy to
acknowledge and address information needs of this diverse population and build resilience. Above all,
information seeking and sharing must be understood within the context of the emotional impact of caring, and
recognition of these twin needs is crucial.
Originality/value –Whilst previous research has focussed on identifying specific needs and knowledge
acquisition at cross-sections, a more holistic understanding of experiences is underexplored. This approach is
needed to take into account broader contexts, diversity of experiences and different caring roles, e.g. primary
and secondary carers, and in situ and distance carers.
Keywords Dementia, Informal carers, Information needs, Information seeking
Paper type Research paper
1. Introduction
A previous paper (Sbaffi and Hargreaves, 2022) presented findings from a qualitative study
of informal caregivers of people with dementia focussing on how they formed perceptions of
the trustworthiness of information sources relevant to their caregiving role. This paper
extends the analysis of data collected in this research to focus on perceived barriers to, and
enablers of, their effective seeking and acquisition of relevant and trustworthy information,
and the extent to which their information needs are, and are not being met.
In the UK, there are 670,000 informal unpaid (or family) carers looking after a person living
with dementia (PLwD) (Carers Trust, 2020) and it is estimated that one-in-three people will
undertake this caring role for a relative or friend within their lifetime (NHS England, 2022).
The caring role is complex and demanding, involving balancing the impact of dementia on
their own lives while fulfilling the needs of their care recipients (Cabote et al., 2015). This
raises information needs that have dual interrelated elements –the carer’s own needs and
Informal
caregivers of
people with
dementia
281
This study was funded by the Information School, University of Sheffield.
The current issue and full text archive of this journal is available on Emerald Insight at:
https://www.emerald.com/insight/0022-0418.htm
Received 20 March 2022
Revised 2 June 2022
Accepted 4 June 2022
Journal of Documentation
Vol. 79 No. 2, 2023
pp. 281-300
© Emerald Publishing Limited
0022-0418
DOI 10.1108/JD-03-2022-0066
those of the person they are caring for. Carers are a diverse group in terms of roles,
relationships, circumstances and the needs that arise from different stages of the caring
journey (Department of Health and Social Care, 2018;Larkin et al., 2019;Moriarty et al., 2015).
The role has significant informational challenges as carers play a key role in navigating
support services, their own information needs and those of the PLwD, which shift and change
over the caring trajectory (Department of Health and Social Care, 2018).
Carers have diverse information needs and existing research has focussed on needs
deriving from aspects of care, such as medication administration (e.g. Horne et al., 2018;
Malloy-Weir and Kirk, 2017), management of behavioural symptoms (Werner et al., 2017)or
dealing with co-morbidities (e.g. McWilliams et al., 2018). Researchers have also explored
needs at different points of the caring trajectory, in particular diagnosis (e.g. Killen et al., 2016;
P
alsd
ottir, 2017). These studies showed that carers are poorly supported at diagnosis and are
provided with limited information on key aspects such as emotional, financial and practical
support (Killen et al., 2016).
However, as noted in Sbaffi and Hargreaves (2022), although an increasing number of
sources of information relevant to caregivers is available, they still report many unmet needs
when it comes to accessing and securing trustworthy information (e.g. Mason et al., 2020;
Myrick, 2017) and they can feel inadequately informed and ill-prepared to fulfil their role
(Allen et al., 2020).
Alzougool et al. (2013) developed a conceptual framework of four types of information
needs: recognised demanded (carers are aware of their information needs and want them to be
met), recognised undemanded (carers are aware of their information needs but do not want
them to be met), unrecognised demanded (carers are not aware of having information needs
but they perceive that they might need information) and unrecognised undemanded (carers
are not aware of potentially relevant missing information, hence cannot establish whether
they need to satisfy such a need). The study concluded that there is still a considerable gap in
the information available to carers and more nuanced and personalised resources should be
provided.
Alzougool et al. (2017) go on to identify statistically significant correlations between the
reporting of these different need states and a number of individual and social variables.
However, they do not proffer theoretical explanations of how or why these states might occur,
or explore differences in the extent to which these information needs do or do not go on to be
pursued and fulfilled –and why. A number of existing theoretical models offer potential
insights into at least parts of the complex interactions between perceived needs, the intention
to pursue these needs, and success or failure in so doing.
Many of these models explore strategies, processes and influences applying to people
in a recognised demanded information state who are trying to satisfy their information
needs. If the information required to resolve their need is not provided to a carer (e.g. by
healthcare providers) then they must seek it out for themselves. However, a number of
factors may intervene to affect their success in so doing. Different people may possess
very different levels of information literacy in terms of the knowledge and skills required
effectively to seek out, obtain, evaluate and use information. They may also vary in the
extent to which they have access to appropriate information, and the extent to which
from all available sources they choose which to trust and access, ignoring or rejecting
others.
Chatman’s (1999) “small worlds”theory offers insights into how different contexts and
social networks may influence people in how they place trust in, and consequently use or not
use particular sources of information. According to her theory, people may tend to favour –in
terms of attributing them with trust and credibility –sources that are accepted within their
“small worlds”, a small world being a social group in which “mutual opinions and concerns
are reflected by its members and in which the interests and activities of individual members
JD
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