Information and care: A relational approach

Abstract

This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer's Society - run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships ('understanding and care' and 'emotional impact of information'), and another theme relating to the context within which the information was provided and shared ('relational practices in information-giving and receiving'). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers' support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.

On digital intimacy: redefining provider–patient relationships in remote monitoring

“…On the provider side, some studies have investigated the invisible work of telecare operators who attempt to create closeness at distance, showing that achieving this comes at a cost (Roberts et al 2012) and that this work is often unrecognised and taken for granted (Korczynski 2009). Further, other scholars have shown how considering patients' sensations and experiences, as well as the sensibility of the practitioner, can improve the quality of clinical decisions (Barnes et al 2016), but it is hard to collect this information via remote monitoring (Bjørn and Markussen 2013).…”

What is it about carer‐led oral hygiene interventions for people with intellectual disabilities that work and why? A realist review

“…The remaining 23 oral hygiene interventions included in the review were of populations other than those with intellectual disabilities only, elderly people 44‐56 , people with dementia 57‐62 or people with disabilities (physical, mixed or unspecified) 63‐66 . The remaining articles were reviews and qualitative studies on the topic of providing oral hygiene care to others 67‐81 . Detailed summary is given in File .…”

Effectiveness–implementation hybrid type 2 study evaluating an intervention to support ‘information work’ in dementia care: an implementation study protocol

“…Longitudinal interviews with people living with dementia and their family carers are a well-established research method. [33][34][35][36][37] The follow-up period is appropriate for research purposes. Over a period of 6 months, personal and family circumstances can change and this may prompt those living with dementia and their family carers to seek help and support.…”