50 research outputs found
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Designing information for families caring for people with dementia
A health communication project, to develop information to support families caring for people with dementia, is described. Close collaboration of designers with carers – ‘experts by experience’ – and clinicians and other professionals – ‘experts by training’ – was used. Carer consultation led to a printed (rather than digital) handbook. An iterative process of carer and clinician consultation and design shaped the material form of the handbook. Carers’ needs for different kinds of information were met by a modular approach, and tailored module design. Evaluation following distribution of the handbook suggested it improved carers’ understanding of dementia significantly compared to the information from diverse sources supplied previously. It did not, however, influence people’s confidence in their ability to care, which appeared to be supported better through carer education courses. The specific contribution of information design and its potential for delivering return on investment are discussed
Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care
Accuracy of prognosis estimates by four palliative care teams: a prospective cohort study
BACKGROUND: Prognosis estimates are used to access services, but are often inaccurate. This study aimed to determine the accuracy of giving a prognosis range. METHODS AND MEASUREMENTS: A prospective cohort study in four multi-professional palliative care teams in England collected data on 275 consecutive cancer referrals who died. Prognosis estimates (minimum – maximum) at referral, patient characteristics, were recorded by staff, and later compared with actual survival. RESULTS: Minimum survival estimates ranged <1 to 364 days, maximum 7 – 686 days. Mean patient survival was 71 days (range 1 – 734). In 42% the estimate was accurate, in 36% it was over optimistic and in 22% over pessimistic. When the minimum estimate was less than 14 days accuracy increased to 70%. Accuracy was related, in multivariate analysis, to palliative care team and (of borderline significance) patient age. CONCLUSIONS: Offering a prognosis range has higher levels of accuracy (about double) than traditional estimates, but is still very often inaccurate, except very close to death. Where possible clinicians should discuss scenarios with patients, rather than giving a prognosis range
Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998-2008)
Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998—2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included. Findings are presented in the following areas: the caregiving experience and contextual features; supporting family caregivers at end of life; caregiving roles and decision-making; and rewards, meaning and coping. We noted a lack of definitional clarity; a reliance on interview methods and descriptive, thematic analyses, and a relative lack of diversity of patient conditions. Research needs are identified in several areas, including the bereavement experience, caregiver ambivalence, access to services, caregiver meaning-making, and relational and contextual influences on family caregiving at end of life. </jats:p
Heterogeneity and changes in preferences for dying at home:a systematic review
Background Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression. Methods We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966-2011), EMBASE (1980-2011), psycINFO (1967-2011), CINAHL (1982-2011), six palliative care journals (2006-11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size. Results 210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death-this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested. Conclusions Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death