Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Garden Cities: A flawed model for Ecological Urbanism?

Since the beginning of the 20th century, the Garden City model has been a predominant theory emerging from Ecological Urbanism. In his book Howard observed the disastrous effects of rapid urbanization and as a response, proposed the Garden City. Although Howard’s proposal was first published in the late 1800’s, the clear imbalance that Howard aimed to address is still prevalent in the UK today. Each year, the UK wastes nearly 15 million tons of food, despite this an estimated 500,000 people in the UK go without sufficient access to food. While the urban population is rapidly increasing and cities are becoming hubs of economic activity, producing wealth and improving education and access to markets, it is within these cities that the imbalance is most evident, with a significant proportion of the world’s population with unmet needs living in urban areas. Despite Howard’s model being a response to 17th century London, many still consider the Garden City model to be an effective solution for the 21st century. In his book, Howard details the metrics required for the design of a Garden City. This paper will discuss how, by using this methodology and comparing it with more recent studies by Cornell University and Matthew Wheeland (Pure Energies); it is possible to test the validity of Howard’s proposal to establish whether the Garden City model is a viable solution to the increasing pressures of urbanization.
This paper outlines how the analysis of Howard’s proposal has shown the model to be flawed, incapable of producing enough food to sustain the proposed 32,000 population, with a capacity to produce only 23% of the food required to meet the current average UK consumption rate. Beyond the limited productive capacity of Howard’s model, the design itself does little to increase local resilience or the ecological base. This paper will also discuss how a greater understanding of the
Land-share requirements enables the design of a new urban model, building on the foundations initially laid out by Howard and combining a number of other theories to produce a more resilient and efficient model of ecological urbanism.

The challenge of patients’ unmet palliative care needs in the final stages of chronic illness.

Background: There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited. Aim: This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease. Methods: The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n 18) with the multiprofessional clinical team. Quantitative data were analysed using simple descriptive statistics and simple descriptive statistics. All qualitative data were taped, transcribed and analysed using Colaizzi’s approach to qualitative analysis. Findings: Deteriorating health status was the central theme derived from this analysis. It led to decreased independence, social isolation and family burden. These problems were mitigated by the limited resources at the individual’s disposal and the availability of support from hospital and community services. Generally resources and support were perceived as lacking. All participants in this study expressed concerns regarding the patients’ future and some patients described feelings of depression or acceptance of the inevitability of imminent death. Conclusion: Patients dying from chronic illness in this study had many concerns and unmet clinical needs. Care teams were frustrated by the lack of resources available to them and admitted they were ill-equipped to provide for the individual’s holistic needs. Some clinicians described difficulty in talking openly with the patient and family regarding the palliative nature of their treatment. An earlier and more effective implementation of the palliative care approach is necessary if the needs of patients in the final stages of chronic illness are to be adequately addressed. Pa

Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers whohad lost a loved one in the preceding 6 to 24 months.These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

Exploring the needs of socially excluded young men

In recent years, social exclusion has gained the attention of governments around the world. This paper reports on a qualitative study involving 27 young men aged 14-19 years experiencing particular forms of exclusion in the context of Northern Irish society. The study used a focus group methodology to elicit their views with the aim of exploring both emotional and psychological needs and the structural factors that may contribute to their experiences of social exclusion. The findings reveal a range of unmet social and psychological needs, the impact of sectarianism and segregation, and a paucity of support systems in place. The paper concludes by making recommendations about how policy-makers and practitioners could find more imaginative ways of engaging such vulnerable young men to reduce social exclusion.