Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers

Abstract

Objective To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams

“…Meeting different persons and having to repeat information or not having a trusted person to discuss care options with results in frustration (Klarare et al, ). Experiencing inclusion in care planning and being in a partnership helped patients and family caregivers continue with everyday life, as reported by patients with advanced cancer and family caregivers in this study and other studies (Melin‐Johansson et al, ; Milberg et al, ; Sarmento et al, ). Palliative care provision is complex, and appreciation of the highlighted nuances in this study may develop care further to better meet expressed or anticipated needs in patients with advanced cancer and their family caregivers.…”

“…While the experiences of patients and family caregivers differ, the same components of care seem likely to meet their different needs according to a meta-ethnography of patients' and families' experiences of home care. The concepts of presence, in the sense of availability and home visits, and competence, in the sense of effective symptom control and skilful communication have been identified as crucial for both patients and family caregivers to feel a sense of security (Sarmento, Gysels, Higginson, & Gomes, 2017).…”

Influences on Care Preferences of Older People with Advanced Illness: A Systematic Review and Thematic Synthesis

“…We also identify potential areas clinicians could focus on to support patient preferences. It may be impossible to change illness or individual factors, but it is potentially possible to make positive changes to care and to support family involvement . An individual whose preference for place of care is home but is concerned about the effect on his or her family may trade off and change his or her preference to institutional care.…”

“I didn't want to be in charge and yet I was”: Bereaved caregivers' accounts of providing home care for family members with advanced cancer

“…Areas of care that were valued, but often not actualized, were consistency of home care providers; accessibility of staff; nursing and personal support for patients that matched the degree of need; and an efficient system that anticipated needs, rather than requiring constant intervention initiated by the caregiver. Although community‐based palliative care services may allow patients to remain at home and curtail hospital costs, an adequate investment is necessary to allow sufficient support for patients and caregivers, including 24‐hour support . Our study also highlights the need for better preparation and supports for caregivers in the period immediately following death, which may avert bereavement‐related distress …”