{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,3,22]],"date-time":"2025-03-22T11:53:48Z","timestamp":1742644428278},"reference-count":64,"publisher":"Emerald","issue":"2","license":[{"start":{"date-parts":[[2022,6,21]],"date-time":"2022-06-21T00:00:00Z","timestamp":1655769600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.emerald.com\/insight\/site-policies"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JD"],"published-print":{"date-parts":[[2023,3,6]]},"abstract":"Purpose<\/jats:title>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.<\/jats:p><\/jats:sec>Design\/methodology\/approach<\/jats:title>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.<\/jats:p><\/jats:sec>Findings<\/jats:title>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.<\/jats:p><\/jats:sec>Practical implications<\/jats:title>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.<\/jats:p><\/jats:sec>Originality\/value<\/jats:title>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<\/jats:italic> and distance carers.<\/jats:p><\/jats:sec>","DOI":"10.1108\/jd-03-2022-0066","type":"journal-article","created":{"date-parts":[[2022,6,21]],"date-time":"2022-06-21T15:46:50Z","timestamp":1655826410000},"page":"281-300","source":"Crossref","is-referenced-by-count":9,"title":["Information seeking amongst informal caregivers of people with dementia: a qualitative study"],"prefix":"10.1108","volume":"79","author":[{"ORCID":"http:\/\/orcid.org\/0000-0002-5015-0037","authenticated-orcid":false,"given":"Sarah","family":"Hargreaves","sequence":"first","affiliation":[]},{"ORCID":"http:\/\/orcid.org\/0000-0003-4920-893X","authenticated-orcid":false,"given":"Laura","family":"Sbaffi","sequence":"additional","affiliation":[]},{"ORCID":"http:\/\/orcid.org\/0000-0002-5546-7332","authenticated-orcid":false,"given":"Nigel","family":"Ford","sequence":"additional","affiliation":[]}],"member":"140","published-online":{"date-parts":[[2022,6,21]]},"reference":[{"issue":"4","key":"key2023030414461401400_ref001","doi-asserted-by":"publisher","first-page":"16","DOI":"10.21926\/obm.geriatr.1904081","article-title":"Admiral nursing in primary care: peri and post-diagnostic support for families affected by dementia within the UK primary care network model","volume":"3","year":"2019","journal-title":"OBM Geriatrics"},{"issue":"1","key":"key2023030414461401400_ref061","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1093\/ageing\/afz128","article-title":"Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden","volume":"49","year":"2020","journal-title":"Age and Ageing"},{"issue":"1","key":"key2023030414461401400_ref002","article-title":"The nature and constitution of informal carers' information needs: what you don't know you need is as important as what you want to know","volume":"18","year":"2013","journal-title":"Information Research"},{"issue":"3","key":"key2023030414461401400_ref003","doi-asserted-by":"publisher","first-page":"261","DOI":"10.1080\/17538157.2016.1221409","article-title":"The effects of informal carers' characteristics on their information needs: the information needs state approach","volume":"42","year":"2017","journal-title":"Informatics for Health and Social Care"},{"issue":"2","key":"key2023030414461401400_ref004","doi-asserted-by":"publisher","first-page":"381","DOI":"10.1108\/JD-04-2020-0049","article-title":"Modelling the information seeking and searching behaviour of users with impairments: are existing models applicable?","volume":"77","year":"2021","journal-title":"Journal of Documentation"},{"issue":"6","key":"key2023030414461401400_ref005","doi-asserted-by":"publisher","first-page":"1942","DOI":"10.1111\/hsc.13048","article-title":"What do family caregivers of people with dementia need? 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