Information seeking amongst informal caregivers of people with dementia: a qualitative study

Abstract

PurposeThis 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/approachThe 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.FindingsThematic 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 implicationsThis 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/valueWhilst 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.

Addressing the information needs of informal carers in Malawi: a healthcare intervention based on co-creation

“…In terms of the information needs that relate to the cared for person, earlier studies have found that these can be quite diverse but will likely concern medication aspects, symptom identification and management and management of behaviour and behavioural changes, among other (Hargreaves et al, 2023); as such, the exact needs will vary depending on the condition of the cared-for person. With regards to informal carers of HIV/AIDS patients in particular, as in our case, first and foremost, information needs will relate to the diagnosis and the progression of the condition (Selman et al, 2009), that is information on how the disease might affect the cared-for person over the longer term (Ogden et al, 2006).…”

“…Beaver and Witham, 2007), dementia (e.g. Hargreaves et al, 2023) and other acquired but non-transmittable conditions (e.g. Everhart et al, 2020;Girardi et al, 2021).…”

“…Research to date indicates that, despite the critical role informal carers play in healthcare, social care and the economy, their information needs are generally not well understood, and therefore remain largely unmet (Hargreaves et al. , 2023).…”

“…More specifically, the information needs of informal carers “have dual interrelated elements” (Hargreaves et al. , 2023, p. 281), whereby the information required relates both to how to look after the cared-for person as well as how to care for themselves and manage their role.…”

“…In terms of the information needs that relate to the cared for person, earlier studies have found that these can be quite diverse but will likely concern medication aspects, symptom identification and management and management of behaviour and behavioural changes, among other (Hargreaves et al. , 2023); as such, the exact needs will vary depending on the condition of the cared-for person.…”