Caregivers for people at end of life in advanced age: knowing, doing and negotiating care

Abstract

this work furthers current understandings of care, as multifaceted and negotiated. This has very practical implications for thinking about how best to support the complex end of life caregiving work of people caring for a person in advanced age.

Identifying and assessing the needs of carers of patients with palliative care needs: an exploratory study

“…To minimise the carer's burden, assessing and planning interventions to meet the carer's needs is vital (Alvariza et al 2018;Hudson and Aranda, 2014;Thomas et al 2018). Although supporting carers now receives increased focus and more carerspecific interventions are available (Alvariza et al 2018;Applebaum and Breitbart 2013;Harding et al 2012;Hudson and Aranda 2014;Thomas et al 2018;Wiles et al 2018), the limited scope of systematic implementation means that all carers' needs and preferences are not necessarily met (Ates et al 2018). Health professionals need to engage the carer to give them permission to articulate their needs and understand their role, which allows assessment and planning of appropriate support (Alvariza et al 2018;Ates et al 2018;Thomas et al 2018).…”

“…When the carer role is performed by a close family member, the provision of palliative care also affects the broader family unit (Alvariza et al 2018). Numerous barriers -associated with the individual carer, the health system and inadequate communication -challenge the provision of timely and effective support for carers (Ates et al 2018;Thomas et al 2018;Wiles et al 2018). In recognition of these issues, some systematic reviews have documented interventions and clinical tools that target the needs of carers (Hudson, Trauer et al 2010;Candy et al 2011;Bostanci et al 2012).…”

“…Their review noted that "there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions" (Hudson, Trauer et al 2010, 1). Although research has progressed in this area (Alvariza et al 2018), systematic implementation of useful tools in practice, remains a key challenge (Ates et al 2018;Thomas et al 2018;Wiles et al 2018). The carers' needs should be acknowledged as an extension of the care provided to the patient; carers need to be given information to enable them to work in partnership with health professionals (Ates et al 2018;Virdun et al 2016).…”

“…Therefore, although the assessment and planning for carer support requires its own specific focus, it is often added on to assessments and planning performed for the patient. Palliative care guidelines (Hudson, Remedios et al 2010) and standards (PCA 2018) acknowledge the need to plan support for carers; however, gaps in practice continue (Ates et al 2018;Henderson 2014;Thomas et al 2018;Wiles et al 2018). In response to these gaps, this study explored the experiences of specialist palliative care nurses in identifying, assessing and planning care to support carers of patients with palliative care needs.…”

Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role

“…Cancer caregivers (family member or friend of the patient) are often responsible for gathering and disseminating health information and accompanying patients to clinical visits . During clinical visits, caregivers often work to improve the provider's understanding of the patient by introducing medical topics and clarifying or expanding medical history .…”