A review of family carers' experiences of hospital discharge for people with dementia, and the rationale for involving service users in health research

Abstract

In the UK, service user involvement is an important factor in health policy, and obtaining research funding. It may be helpful in expanding our knowledge in areas where research evidence is poor such as experiences of hospital discharge planning for the family carers of people with dementia.MethodsA rapid review. All study designs published in the English language were eligible for inclusion. Databases included: Medline, Embase, CINAHL, PsycInfo, Cochrane library and Web of Knowledge. A qualitative analysis was undertaken.ResultsFour themes were identified: preparation for hospital discharge – dissatisfaction with being kept informed, discharge arrangements and management of conditions; little time to prepare. Communication between staff and families at discharge – insufficient communication regarding services, not being listened to and being undervalued as a resource could compromise post-discharge care. Support services post discharge – carers need help negotiating, and working with, services with regard to timing, and meeting requirements. Coping post hospital discharge – inadequate understanding about ability to cope, and patient’s impairment, and family conflict over care may lead to unnecessary re-admission to hospital, or long term care. Evidence of specialist dementia models at discharge is described.DiscussionCarers are not always involved in hospital discharge planning as well as they might be. Issues are complex and depend on a number of factors. Poor communication can be overcome and carers can be better supported to cope post discharge as illustrated in the dementia models. The evidence base is weak but the absence of evidence does not indicate an absence of good practice.ConclusionCarers who may feel their world is far removed from the academic world may not ordinarily participate in research studies. Service users, as co-researchers, may be able to improve trust and rapport between research and communities, collect fresh insights and gain deeper and more insightful data from participants.

Hospital discharge processes involving older adults living with dementia: An integrated literature review

“…Family carer participation was often limited by lack of confidence. Most family carers want to be acknowledged as a resource to benefit care delivery, but were intimidated by the decision‐making process and the “expert” knowledge exhibited by health professionals (Bloomer et al., ; Emmett et al., ; Lindhardt et al., ; Mockford, ). Three studies highlighted that health professionals lack the skills and/or time to effectively engage with family carers of older people with dementia and therefore families’ knowledge of the person's health and social circumstances was not used (Emmett et al., ; Jurgens et al., ; Mortenson & Bishop, ).…”

The development of service user‐led recommendations for health and social care services on leaving hospital with memory loss or dementia – the SHARED study

“…There is little published literature on the experience of discharge from hospital for patients and carers living with undiagnosed memory problems, or diagnosed dementia . It has been reported that the voices of those with dementia are seldom heard .…”

“…3 There is little published literature on the experience of discharge from hospital for patients and carers living with undiagnosed memory problems, or diagnosed dementia. 4 It has been reported that the voices of those with dementia are seldom heard. 5 The value of the involvement of lay co-researchers has been documented particularly where the co-researcher shares similar attributes, for example age or ethnicity 6 or shares experiences akin to those being researched 7 and who may be in a good position to access seldom heard groups.…”

When long-term care comes to an end: informal caregivers’ perspectives on patient discharge

“…It is true that more individualized and regular home support services, strengthening a relationship of proximity and help between the person with dementia and the informal/formal caregivers, as well as economic support could promote the return home of the person with dementia. Mockford (2015) reinforces the need to develop customized and person-centered services, highlighting that, in preparation for hospital discharge, there is dissatisfaction with the available information and the management of conditions, mainly due to the little time to prepare and the insufficient communication with family members regarding services. The author also alerts to the lack of support services after discharge for caregivers who need help negotiating and managing their availability.…”