Christine Rowland

The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures

Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.

The effect of smoking on health-related quality of life in lung cancer patients: a systematic review

Introduction Given poor survival rates for lung cancer, health-related quality of life (HRQoL) is very important. Smoking is prevalent among those diagnosed with lung cancer, and continued smoking is associated with compromised HRQoL in other patient groups. Aims A systematic review was conducted to determine: (i) differences in HRQoL between lung cancer patients who smoke compared with those who quit or never smoked and (ii) changes in HRQoL in patients who continue to smoke after diagnosis compared with those who quit or never smoked. Method Scopus, Medline, PubMed, PsychINFO and Web of Knowledge from January 1995 to June 2010 were searched. The included studies were assessed and given a score for quality. Results Eight studies met the inclusion criteria. Four studies showed that lung cancer patients who smoked report impaired HRQoL compared with those who never smoked or had quit. Smokers reported significantly lower HRQoL than former smokers, who in turn reported lower HRQoL than never smokers. This finding remained consistent over time. Conclusions When taking account of methodological quality, smoking is associated with poorer HRQoL in lung cancer patients. These results suggest that programmes are needed to address the specific support needs of this group and promote HRQoL during their final months. Longitudinal research is necessary to further understand the association between smoking and HRQoL.

Quality of life, support and smoking in advanced lung cancer patients: a qualitative study

Background Lung cancer is the most common cancer and smoking is the principal cause. Due to poor survival rates, symptom palliation and promotion of health-related quality of life (HRQoL) are primary outcomes for lung cancer patients. Given the established relationship between smoking and lung cancer, patients who have smoked may feel stigmatised or guilty after diagnosis, and more pessimistic about their illness and likely outcomes. This may have adverse implications for HRQoL. Objectives We explored HRQoL and support experiences among newly diagnosed patients with advanced lung cancer. Design Semistructured interviews were conducted with nine patients and analysed using interpretative phenomenological analysis. Results Patients described the physical, emotional and social impact of disease on HRQoL. Fear of compromising their immune system and adjusting to new relationship roles had a wide-ranging effect on patients’ HRQoL. Patients acknowledged links between lung cancer and smoking but some continued to smoke. They were sensitive to the opinions of medical staff about smoking especially those who continued to smoke or recently quit. Conclusions We conclude that staff should give clearer advice about the adverse implications of continued smoking. We discuss the potential value of diagnosis as a teachable moment for promoting smoking cessation among patients and family members.

Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey:

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers’ psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient’s last 3 months of life. Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 (N = 6477–6790). Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers’ general health scores were lower than population scores, median 75 (interquartile range, 50–80) versus 80 (interquartile range, 70–90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

14 Enabling tailored and coordinated support for family carers of people with motor neurone disease through adaptation of a carer support needs assessment tool (CSNAT) intervention

Introduction Family carers provide vital support for people with Motor Neurone Disease (MND) but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this. Aim To adapt an existing carer support needs assessment tool (CSNAT) intervention to support the needs and situation of family carers of people with MND. Methods Stages: Focus groups and interviews with 33 carers (14 bereaved 19 current carers) to capture support needs key points of change during patient’s illness and main support services. Workshops with HCPs (N=17 recruited to date) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support. Results Stage 1: Carers’ experience was one of dealing with a devastating diagnosis a constantly changing situation with heavy dependence on them as carers and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains but MND carers may experience relationship issues warranting further consideration. Stage 2 will integrate HCP and carers’ views on when where how and by whom MND carer assessment and support should best be provided. Conclusions Findings to be presented from Stages 1 and 2 will provide insights into how MND carers want to be assessed and supported. This will form the basis for an intervention to be tested in a future Stage 3 feasibility study. Funder Marie Curie Research Fund/Motor Neurone Disease Association

A model for practice implementation of a person-centred approach to carer assessment and support within palliative care (Plan, Pilot, Train, Sustain)

Introduction The Carer Support Needs Assessment Tool (CSNAT) intervention ensures a person-centred approach to carer assessment and support within palliative care.1–3 An online toolkit has been developed to prepare and support organisations with implementation of the CSNAT intervention in palliative care practice. Aims To test the feasibility of an online toolkit to assist organisations with implementation of a person-centred approach to carer assessment and support within palliative care. Methods The Plan, Pilot, Train, Sustain model has been developed from the on-going CSNAT research programme; based on feedback from 89 organisations supporting carers using the CSNAT intervention. This model underpins the online toolkit which consists of two learning components: (i) to provide practitioners with the knowledge to use the CSNAT intervention, (ii) to assist organisations to plan, pilot and sustain the use of the CSNAT intervention. Seven organisations have been recruited to a feasibility study (due to conclude June 2017). Up to 20 practitioners will provide feedback on toolkit content and online user experience via a survey and qualitative interview. Results Feasibility results will be reported: how informative and useful the content is, and how suitable it is for use within existing resources of palliative care services (e.g. time to complete, IT resources). This will enable refinements to toolkit content and instructions. Conclusions This online toolkit will assist services to respond to the increasing pressures to assess and address the support needs of family carers by providing accessible and structured guidance on how to implement the CSNAT intervention, and help ensure embedding into practice. References . Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine2013;27(3):244–256. . Ewing G, Brundle C, Payne S, Grande G. The Carer Support Needs Assessment Tool (CSNAT) for Use in Palliative and End-of-life Care at Home: A Validation Study. Journal of Pain and Symptom Management2013;46(3):395–405. . Ewing G, Austin L, Diffin J, Grande G. Developing a person-centred approach to carer assessment and support. British Journal of Community Nursing2015;20(12): 580–584.