Terminal care : domiciliary

Objective: This study examined the features of informal end-of-life care of older people living in the community and the association between informal care characteristics and dying at home. Methods: Retrospective data were obtained from interviews and self-administered questionnaires of 56 persons who had been primary caregivers of older relatives in the last three months of their lives. Results: Results showed that informal caregivers of terminally ill older people living in the community provided a considerable amount of personal, household, and management care.

The provision of home-based palliative care requires a substantial unpaid contribution from family and friends (i.e. informal care). The present cross-sectional descriptive study, conducted between September 2003 and April 2004, describes this contribution and the impact it has on those providing informal care. The participants were 82 informal carers of patients registered with two community palliative care services in Sydney, Australia (40% of eligible carers).

Approximately 1,500 people a day die of cancer. Most are cared for by an informal caregiver. The purpose of this study was to identify the unmet spiritual needs of informal caregivers and explore the relationships between the patient's symptom distress, caregivers' unmet needs, and caregivers' depressive symptomatology at the time of admission to hospice. The sample consisted of 110 caregivers of hospice home care patients with cancer. The Spiritual Needs Inventory and Center for Epidemiological Studies Depression Scale were administered to caregivers of newly admitted patients.

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW.

Literature review of issues which are of importance to informal carers of people with terminal illness. The advantages and disadvantages of caring for a dying relative and carers' need for information and support are discussed. 4 case studies and a list of useful resources for carers are included and recommendations are made for nursing care. 

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities.

The purpose of our study was to identify the information and support needed by carers of the terminally ill or those receiving palliative care. Carers, in this instance, are family members, friends or neighbours. A review of the literature was sponsored by Help the Hospices’ four-year project, Care for the Carers of the Terminally Ill, funded by the Tubney Charitable Trust. The review was conducted in August 2006 and the content analysis was completed in October that year.

Giving patients with cancer a choice in where they want to die including the choice to die at home if they so wish, underpin the recent UK government policies and is embedded in the End of Life Care Programme. However, this presents increasing challenges for the informal carers particularly with an increasingly aging population. Despite the policy initiatives, there remain a persistent number of patients with cancer who had chosen to die at home being admitted to hospital in the last days and hours of life.

Despite evidence of high psychological distress and unmet needs, evaluated interventions for informal caregivers in palliative care are few. This study involved an observational outcome evaluation of attendees, and a comparison group, in specialist home palliative care. The measures included carer psychological status and patient physical status at baseline, 8 weeks, and 20 weeks. Qualitative data were collected regarding content, satisfaction with, and impact of intervention. Process data described the uptake, resources, and group activity.