Hospice at Home service: the carer’s perspective

Abstract

The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service.

The Psychosocial Context of Bereavement for Older Women Who Were Caregivers for a Spouse With Advanced Cancer

“…A death from cancer often occurs after an intense, challenging trajectory of decline, with difficult-to-manage symptoms and obvious declines in physical functioning (Lunney, Lynn, Foley, Lipson, & Guralnik, 2003), which may have a distinctive impact on bereavement. Bereaved family caregivers of cancer patients describe their bereavement experience of overwhelming emotions and a lack of support (Grbich, Parker, & Maddocks, 2001;Hudson, 2006;Kristjanson, Cousins, Smith, & Lewin, 2005;McLaughlin, Sullivan, & Hasson, 2007). Depression (Wyatt, Friedman, Given, & Given, 1999), loss of appetite (Brazil et al, 2003), sleep problems (Carter, 2005), poor health (Kristjanson et al, 2005), distressing grief over an unpredictable length of time (Chentsova-Dutton et al, 2002), and higher rates of death during bereavement (Christakis & Iwashyna, 2003) have been reported in studies with bereaved caregivers of cancer patients.…”

Persistent inequalities in Hospice at Home provision

“…26 27 While there is some evidence that community-based palliative care teams may reduce acute care use at the end of life and hospital deaths, 28 international studies of the effectiveness of H@H services are limited by the diverse models of care, which have often been developed in response to varying local needs. 17 29 The small body of evidence suggests bereaved lay carers and healthcare professionals have broadly favourable opinions and experiences of H@H. [30][31][32][33] Death at home with community support is associated with lower health resource costs compared with death in hospital or hospice. 34 35 H@H and similar home-based palliative services continue to be developed across the UK and in other countries, yet few studies have described in any detail the care provided.…”

Guidelines for the Psychosocial and Bereavement Support of Family Caregivers of Palliative Care Patients

“…5 There are many reasons why family caregivers should be offered psychosocial support. 6 Caregivers typically are prone to physical and psychological morbidity; [7][8][9][10][11][12] are responsible for numerous tasks, such as symptom management; 8 are financially disadvantaged; 8,9,13 become socially isolated; 14 report unmet needs; 15 experience psychological distress at similar levels to patients; 16 are often not aware there is support available to them; 4 have needs equal to and/or greater than the needs of patients; 17 have very limited prior exposure to death and dying; 8,15 are often excluded from information and care planning and consequently feel underprepared for their role; 15,18 can improve the care of palliative care patients; [19][20][21] have the potential (with suitable support) to gain positive outcomes from the role; 9,15,22 are pivotal to achieving 'successful' home care (where most people prefer to die); 21,23,24 and make a very significant economic contribution to health care. 25 Even though there is a requirement for health and psychosocial care professionals to support family caregivers, the reality is that in many instances this support is suboptimal.…”