Hearing family carers: report on research undertaken with family carers in Cork

This report details the findings of research undertaken with family carers in Cork during 2007 – 2008. The research was undertaken to elicit the views and experiences of family carers, and in so doing, to gain insight into their perspectives on family caring and on associated support mechanisms. It is hoped that, thereafter, policy can draw on these observations. Three key themes emerged from the research itself. These are (i) the role and position of the family carer in society, (ii) the process of family caring itself and (iii) access to and knowledge of key support services. This report, then, draws attention to the extent and dynamics of family caring, as seen through the opinions and experiences of carers located in and nearby Cork city. It has the following format. In the first instance we turn our attention to a discussion of family caring in Ireland, and associated supports more generally. This includes a discussion on key issues arising in the general discourse around family caring in Ireland and internationally, in order to provide a context from which to locate the experiences of carers involved in this research study. Thereafter, we detail the methodology employed in this research study, which followed a method of research enquiry that values the input of participants from the early stages of research focus and design, and which incorporates qualitative and quantitative methods of enquiry. The research was conceptualised and developed in conjunction with The Carers Association, Cork in keeping with an approach to social research that attempts to link academic and activist/advocacy interests. Its aims were to identify issues that family carers in the locality considered important, with a view to contributing to local knowledge, providing a forum for ongoing research, and to informing policy developments on carers. The focus of the report then turns to profiling carers who participated in the research, examining the care they provide, and discussing support they receive from family, friends and neighbours – from informal sources. We then look to the access carers have to formal and public, community-based support services. We examine their experiences of, and concerns with regard to some of these key services, and look at ways that such issues might be addressed. The next section concentrates on financial supports, a range of which are available to carers, for instance, to supplement income and to assist with home renovations. We look at their uptake and issues arising, again with a view to understanding and addressing them from the perspectives of the service users. Finally, the report turns its attention to aspirations that carers have for themselves; in terms of their own personal, training, and employment options. The report concludes by drawing attention to key issues discussed throughout and makes a number of key recommendations, aimed at addressing the voiced opinions and experiences of carers that have emerged through the research.

Caregiver burden and resilience among Malaysian caregivers of individuals with severe mental illness

Little research has focused on caregiver burden experienced by Malaysian caregivers of individuals with mental illness, despite the fact that data in the Asian region shows almost threequarter of patients with mental illness live with family members. The aim of this research was to examine the levels of caregiver burden and resilience of caregivers of individuals with severe mental illness and to determine the influencing factors on caregiver burden. A quantitative, cross sectional, correlational design was used to measure burden and resilience and to explore the relationship between demographic variables, caregiver stressors, resilience and caregiver burden. This study was guided by the model of Carer Stress and Burden. Data collection was conducted over two months in summer 2014. A self-administered questionnaire that consisted of four sections measuring demographic data, primary stressors, caregiver burden and resilience was used to collect data. Two hundred and one caregivers of individuals with mental illness attending Psychiatric Outpatient Clinics in Malaysia were recruited. Samples were selected using non-probability, consecutive sampling. Factors that were found to be significantly associated with caregiver burden were caregivers’ age, gender, ethnic group, employment status, having a medical condition and current health status. The primary stressors found to be significantly associated with caregiver burden include the time spent for caregiving tasks, unavailability of support with caregiving tasks, lack of emotional support and patients’ behavioural disturbances. In addition, it was found that caregivers who were less resilient reported a higher level of caregiver burden. Findings from hierarchical multiple regression indicated that caregivers’ marital status, current health status, time spent for caregiving and resilience predicted caregiver burden. This research provides insight into caregiver burden among caregivers of individuals with mental illness in Malaysia. It highlights the important factors associated with caregiver burden and the significant role of resilience in reducing caregiver burden.