Experiences and needs of relatives of people with dementia in acute hospitals—A meta‐synthesis of qualitative studies

Burgstaller, Melanie; Mayer, Hanna; Schiess, Cornel; Saxer, Susi

doi:10.1111/jocn.13934

Cited by 43 publications

(63 citation statements)

References 40 publications

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“…Such an approach would mean that family members who routinely support, or speak on behalf of, the person with dementia (family caregivers, also known as care partners) can support the hospital staff's understanding of the perspective of the person with dementia, when providing this information unassisted becomes too challenging for the patient. In contrast, Burgstaller, Mayer, Scheiss, and Saxer () identify that a negative cycle can be initiated when the family is insufficiently involved in care, care is inadequate as a result, and family needs and expectations related to the hospitalisation are influenced by this outcome.…”

Section: Introductionmentioning

confidence: 99%

Obtaining information from family caregivers to inform hospital care for people with dementia: A pilot study

Toye

Slatyer

Quested

et al. 2019

Int J Older People Nursing

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Aim We aimed to implement a systematic nurse–caregiver conversation, examining fidelity, dose and reach of implementation; how implementation strategies worked; and feasibility and mechanisms of the practice change. Background Appropriate hospital care for people living with dementia may draw upon: information from the patient and family caregiver about the patient's perspective, preferences and usual support needs; nursing expertise; and opportunities the nurse has to share information with the care team. Within this context, planned nurse–caregiver communication merits further investigation. Methods In Phase I, we established the ward staff's knowledge of dementia and Alzheimer's disease, prepared seven nurse change leaders, finalised the planned practice change and developed implementation plans. In Phase II, we prepared the ward staff during education sessions and leaders supported implementation. In Phase III, evaluations were informed by interviews with change leaders, follow‐up measures of staff knowledge and a nurse focus group. Qualitative data were thematically analysed. Statistical analyses compared nurses' knowledge over time. Results Planned practice change included nurses providing information packs to caregivers, then engaging in, and documenting, a systematic conversation. From 32 caregivers, 15 received information packs, five conversations were initiated, and one was completed. Knowledge of dementia and Alzheimer's disease improved significantly in change leaders (n = 7) and other nurses (n = 17). Three change leaders were interviewed, and six other nurses contributed focus group data. These leaders reported feeling motivated and suitably prepared. Both nurses and leaders recognised potential benefits from the planned conversation but viewed it as too time‐consuming to be feasible. Conclusions The communication initiative and implementation strategies require further tailoring to the clinical setting. A caregiver communication tool may be a helpful adjunct to the conversation. Implementation may be enhanced by more robust stakeholder engagement, change leader inclusion in the reference group and an overarching supportive framework within which change leaders can operate more effectively. Implications for Practice Nurse‐caregiver communication in this context requires inititatives tailored to the clinical setting with input from all stakeholders.

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Section: Introductionmentioning

confidence: 99%

Obtaining information from family caregivers to inform hospital care for people with dementia: A pilot study

Toye

Slatyer

Quested

et al. 2019

Int J Older People Nursing

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show abstract

“…As a meta-synthesis of qualitative studies shows, relatives of people with dementia experience many negative aspects of care in hospital and are worried and highly burdened because of this [40]. Family caregivers are crucial for the provision of person-centred care for people with dementia [41] and are thus underrepresented in the included interventional studies.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of interventions to improve acute hospital care for people with dementia

Karrer

Schnelli

Zeller

et al. 2020

Preprint

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“…A meta-synthesis of qualitative studies shows that relatives of people with dementia experience many negative aspects of care in the hospital. They are worried and highly burdened [46]. Family caregivers are crucial for providing person-centred care for people with dementia [47].…”

Section: Discussionmentioning

confidence: 99%

A systematic review of interventions to improve acute hospital care for people with dementia

Karrer

Schnelli

Zeller

et al. 2020

Preprint

Self Cite

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Background: People with dementia are confronted with negative consequences due to hospital stays. When developing new interventions to improve care for people with dementia in acute care hospitals (by intervention we understand organisational strategies, programmes, and/or treatments and actions performed by healthcare professionals), it is crucial to have a comprehensive overview of previous interventions tested in this field and to know the outcomes.Methods: We conducted a systematic review to provide an overview of interventions targeting the care situation of patients with dementia in acute care hospitals. We included trials with interventional study designs and systematic reviews without restrictions regarding the outcomes. We searched five electronic databases, conducted a hand search of journals and performed forward and backward citation tracking of included studies. For risk of bias assessment, we used the Cochrane Collaboration’s tool for assessing risk of bias in randomised trials, ROBANS (for non-randomised controlled trials) and AMSTAR (for systematic reviews). We provide tabular and narrative summaries of the findings. Results: Twenty studies met the inclusion criteria. The findings indicated a broad range of interventions and outcomes. We categorised the interventions into eight intervention types: educational programmes, special non-pharmacological interventions, delirium management programmes, inpatient rehabilitation interventions, family-/person-centred programmes, use of specially trained nurses, volunteer programmes and special care units. Staff outcomes were investigated in most of the studies, followed by patient outcomes. Outcomes concerning relatives were reported in four studies. Educational programmes were the most commonly reported intervention type and resulted in improved staff outcomes. Family-/person-centred care programmes, use of specially trained nurses and delirium management programmes were effective in improving patient-related outcomes, e.g. delirium severity and functional performance. Rehabilitation interventions after hip fractures and special care units for people with dementia hardly showed any significant effects. Conclusions: Although the included interventional studies reported improved outcomes concerning patients, relatives and staff, the evidence is insufficient to declare which interventions are effective in improving care for people with dementia in acute care hospitals. Future research should focus on relevant patient and family caregiver outcomes. Thereby, it is necessary to consider the complexity of the interventions. Interventions addressing relatives, interprofessional collaboration and the entire practice culture are needed. Trial registration: PROSPERO: CRD42018111032.

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Experiences and needs of relatives of people with dementia in acute hospitals—A meta‐synthesis of qualitative studies

Cited by 43 publications

References 40 publications

Obtaining information from family caregivers to inform hospital care for people with dementia: A pilot study

Obtaining information from family caregivers to inform hospital care for people with dementia: A pilot study

A systematic review of interventions to improve acute hospital care for people with dementia

A systematic review of interventions to improve acute hospital care for people with dementia

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