Toward a model of continuous care: A necessity for caregiving partners

Abstract

Objective Caregiving partners constitute a unique group, who provide both physical and emotional care for patients. There has been extensive research conducted on caregivers during either the caregiving or bereavement phase; however, these phases are often treated as separate entities rather than as part of a continuum. Method In this paper, utilizing relevant literature and clinical observations, we map the emotional journey and lived experience of caregivers moving from disease progression, to the end of life, to the dying process itself, and then through life after the death of a partner. Along this journey, we identify the links between pre-death caregiving and bereavement. Results Our illustration raises awareness regarding the unmet needs experienced by caregiving partners across the continuum and provides an alternative framework through which clinicians can view this course. Significance of Results We bolster arguments for improved palliative care services and early interventions with distressed caregiving partners by emphasizing continuity of care both before and after a patient’s death.

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

“…Of concern was caregivers’ experience of abandonment by clinicians at bereavement. Others have also reported this (Masterson et al, ) and have warned that this perceived lack of support after a death risks prolonged grief disorder (Sanderson et al, ). The demands of caregiving, bearing witness to distressing symptoms and the emotional and social upheaval of bereavement represent risks to carer suffering and trauma (Payne & Grande, ).…”

“…There has been considerable focus on the experience of caregivers, both during caregiving and in bereavement; however, these two stages are ‘often viewed as discrete and independent entities rather than as reciprocal experiences, in which anticipation of loss hangs over caregiving activities, and the time spent providing care gives shape to mourning’ (Masterson, Hurley, Zaider, & Kissane, , p. 1,460). While a body of research has explored preparedness and caregiver experience (Cagle & Kovacs, ; Holm, Henriksson, Carlander, Wengström, & Öhlen, ; Hudson, Thomas, Quinn, Cockayne, & Braithwaite, ; Schumacher, Stewart, & Archbold, ; Schumacher et al, ) and preparedness and bereavement (Hebert, Prigerson, Schulz, & Arnold, ; Hebert et al, ; Janze & Henriksson, ), we were unable to locate research that focuses on how caregivers’ perception of their preparedness impacts the entirety of caregiving (including bereavement).…”

Long-Term Effect of Receiving a Family Strengths-Oriented Intervention on Family Cancer Caregiver Stress, Anxiety, and Depression Symptoms: A Longitudinal Quasi-Experimental Study

“…This “void” feeling has also been reported in a recent phenomenological study where the participants described a feeling of being deserted by the health care providers when entering the bereavement phase (Mason & Hodgkin, 2019). Masterson and colleagues (2015) have also reported this experience and others have demonstrated the risk of developing prolonged grief disorder among caregivers who perceive they are not being supported after the patient has died (Sanderson et al, 2013).…”

“…The importance of continuing support that begins before bereavement (Kirby et al, 2018; Roulston et al, 2017) and that extends into the bereavement period has been highlighted (Holtslander et al, 2017; Masterson et al, 2015; Milberg et al, 2008). Aoun et al (2017) and Nielsen et al (2017) further emphasized the importance of assessing and supporting family caregivers during the pre-bereavement period.…”

Empowerment from patient’s and caregiver’s perspective in cancer care

“…Any relative, partner, friend or neighbour who has a significant personal relationship with, and provides a broad range of assistance for an adult with a chronic or disabling condition can be defined as ‘caregiver’, and often becomes a lifeline during the care process (Glajchen, 2004). Several authors investigated the role of caregivers as a support for the patient as well as the patient–physician relationship (Masterson et al, 2015; Milne et al, 2006; Reinhard et al, 2008).…”