Psychosocial, educational and communicative interventions for patients with cachexia and their family carers

Purpose of review: Cancer cachexia has a substantial impact on both patients and their family carers. It has been acknowledged as one of the two most frequent and devastating problems of advanced cancer. The impact of cachexia spans biopsychosocial realms. Symptom management in cachexia is fraught with difficulties and globally, there remains no agreed standard care or treatment for this client group. There is a need to address the psychosocial impact of cachexia for both patients and their family carers.

Recent findings: Patients living at home and their family carers are often left to manage the distressing psychosocial impacts of cancer cachexia themselves. Successful symptom management requires healthcare professionals to address the holistic impact of cancer cachexia. High quality and rigorous research details the existential impact of cachexia on patients and their family carers. This information needs to inform psychosocial, educational and communicative supportive healthcare interventions to help both patients and their family carers better cope with the effects of cachexia.

Summary: Supportive interventions need to inform both patients and their family carers of the expected impacts of cachexia, and address how to cope with them to retain a functional, supported family unit who are informed about and equipped to care for a loved one with cachexia.

Growing Up On an Interface: Findings and Implications for the Social Needs, Mental Health and Lifetime Opportunities of Belfast Youth

In this research we aimed to find out what types of risk (if any) affected young people and children growing up in places of high religious segregation or what we normally call interface communities. This is important as we know that risk and experiences of harm and violence can have negative impacts upon development, emotional well-being and future prospects. It is important to understand what types of risk affect young people and children so as we can respond to these in terms of aiding better personal and community development with regard to health, work, education and wider opportunities.

Bereavement outcomes: a quantitative survey identifying risk factors in family carers bereaved through cancer.

Background: Enabling patients to die in their preferred place is important but achieving preferred place of death may increase the informal carer’s risk into bereavement. Aim: to determine risk factors of family carers bereaved through cancer in Northern Ireland. Design: These results form part of a larger QUALYCARE-NI study which used postal questionnaires to capture quantitative data on carer’s bereavement scores using the Texas Revised Inventory of Grief. Setting/participants: Participants were individuals who: registered the death of a person between 1st December 2011 and 31st May 2012; where cancer (defined by ICD10 codes C00-D48) was the primary cause; where the deceased was over 18 years of age and death occurred at home, hospice, nursing home or hospital in Northern Ireland. Participants were approached in confidence by the Demography and Methodology Branch of the Northern Ireland Statistics and Research Agency. Those wishing to decline participation were invited to return the reply slip. Non-responders received a second questionnaire six weeks after initial invitation. Results indicated that risk factors positively influencing bereavement outcomes included patients having no preference for place of death and carers remaining in employment pre or post bereavement. In contrast, patients dying in hospital, carers stopping work, being of lower socio-economic status and close kinship to the deceased negatively impacted on bereavement scores. Family carers should be adequately supported to continue in employment; priority should be given to assessing the financial needs of families from lower socio-economic areas; and bereavement support should focus on close relatives of the deceased.

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.