Why are family carers of people with dementia dissatisfied with general hospital care? a qualitative study

Abstract

BackgroundFamilies and other carers report widespread dissatisfaction with general hospital care for confused older people.MethodsWe undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care.ResultsThe experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers’ perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or ‘crises’) are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of ‘hyper vigilant monitoring’ during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen.ConclusionPeople with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the ‘cycle of discontent’, could help ward staff anticipate carer needs, enable relationship building, to pre-empt or avoid dissatisfaction or conflict.

Dementia and Clinical Interaction in Frontline Radiography: Mapping the Practical Experiences of Junior Clinicians in the UK

“…There are many accounts in contemporary healthcare literature of how new equipment and -particularly -the increased reliance on family/carers simply advantage the clinician when handling patients with dementia (Elkins & Weatherhead, 2014;Jurgens et al, 2012;Livingston et al, 2014;Webb & Dening, 2016). However, the evidence derived from this study indicates a more nuanced interpersonal picture, and one that should not be overlooked in future research.…”

“…Evidence outlines above, however, 6 that operating in this way takes significant case-by-case effort, and this can often work in opposition to organisational healthcare cultures that stress a manner of working efficiency borne of solid 'models' for standardised practice (Jurgens et al, 2012;Miller, 2013).…”

“…Through this order of investigation, research can 1 Even then, a relatively small proportion of MRI investigations of individuals with dementia will directly relate to the dementia itself. 4 ideally highlight communicative issues relevant to the participants themselves in managing the concerns of time-pressured efficiency, ethical practice and patient satisfaction under evermore difficult specific working circumstances (Jurgens, Clissett, Gladman, & Harwood, 2012;Nazarko, 2015;Woods et al, 2016). It is further contended that description of the specific, and often difficult, interactional matters with which these novice medical imaging professionals are faced can add nuance (by comparison and contrast) to the broader social scientific literature on the work of healthcare practitioners involved in the care of individuals with dementia (Manthorpe, 2016;Oppikofer & Geschwindner, 2014;Veselinova, 2013;Webb & Dening, 2016).…”

Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)

“…243,244 In the USA the Institute for Patient-and Family-Centered Care 245 set out four core concepts of patient-and family-centred care: dignity, respect, information sharing, and participation and collaboration. Its approach is based on the premise that families are crucial allies for quality and safety and that the individuals most dependent on health care, such as the very old and those with chronic conditions, are also those who are most dependent on families.…”

Caring Experience of Primary Family Caregiver in Elderly with Dementia at Indonesian Rural Area

“…However, these expectations are not easily achieved if only rely on a hospital without the support and involvement of the family directly. According to Jurgens, Clissett, Gladman, & Harwood (2012), families often complain about the quality of health care provided to dementia, there is dissatisfaction care of patients with dementia, hospital services often bring bad experience, the provision of unrealistic expectations in clients with dementia, and communications are less therapeutic from caregivers in the public hospital.…”