Hospice

Background: It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK.

Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context.

To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid.

This prospective study investigates informal care networks and their impact on hospice outcomes. Primary caregivers (N = 47) were the main source of data from 2 time points: within a week of enrollment in hospice and bereavement. Data were also collected from 42 secondary caregivers. Intraclass correlation coefficients (ICCs) determined correspondence between primary and secondary caregivers regarding informal care network size. Correlations were used to test associations between variables. Nonparametric paired sample tests were used to analyze change in anger and guilt.

Informal caregivers (ICs) are forced to make adaptive lifestyle changes to meet the significant demand of caring for loved ones who are terminally ill. Open-ended questions were administered with 26 ICs who cared for loved ones diagnosed with terminal illnesses whose prognosis was less than six months. The results add substantive information to parsimonious literature and demonstrate a correlation with existing studies that coincide with the debilitating effects that caregiving has on the informal carer.

Family caregivers may experience emotional and relational distress due to decreased intimacy and communication with their loved one at end-of-life. The purpose of the study was to examine intimacy behaviors in a family-patient relationship at the end-of-life with the central research question: Is there a difference in frequency of family caregivers’ intimacy acts, defined and recorded as verbal intimacy, affective intimacy, and physical intimacy with their dying loved one when comparing music therapy and chaplaincy?

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034).