Work-life imbalance: informal care and paid employment

In the United Kingdom informal carers are people who look after relatives or friends who need extra support because of age, physical or learning disability or illness. The majority of informal carers are women and female carers also care for longer hours and for longer durations than men. Thus women and older women in particular, shoulder the burden of informal care. We consider the costs of caring in terms of the impact that these kinds of caring responsibilities have on employment. The research is based on the responses of informal carers to a dedicated questionnaire and in-depth interviews with a smaller sub-sample of carers. Our results indicate that the duration of a caring episode as well as the hours carers commit to caring impact on their employment participation. In addition carers’ employment is affected by financial considerations, the needs of the person they care for, carers’ beliefs about the compatibility of informal care and paid work and employers’ willingness to accommodate carers’ needs. Overall, the research confirms that informal carers continue to face difficulties when they try to combine employment and care in spite of recent policy initiatives designed to help them

Understanding contact between children in out-of-home care and their family of origin : Maltese foster carers’ viewpoints

Foster carers are amongst the main actors facing the challenges on a day-to- day basis when contact related issues arise. Twenty-one Maltese foster carers reported their views about contact and discussed the benefits and their concerns regarding contact between fostered children and the families of origin. Foster carers’ views were elicited and subjected to a thematic analysis. This paper presents different themes reported by foster carers about contact between children and the families of origin. Emotions were present when contact experiences were discussed by foster carers. Despite the difficulties and apprehension, carers believed in children maintaining contact. Some carers even went to great lengths in supporting children to establish contact with their families of origin. This paper also explores how managing contact is mitigated through the support of social work intervention.peer-reviewe

Including Family Carers: Adding Value and Impact to Research

As family carers we are not a homongeneous group but come in all shapes and sizes, and play an invaluable role in society. We have a variety of experiences, and expertise in the needs of the person or people we care for or have cared for as well as our own experiences of being carers. Across the diverse group of carers and caring situations, we each have our own individual voice which may differ from that of the person we care for. Yet, in research studies our voices are sometimes excluded or only sought when the cared for person is unable to give their own views. The focus on services or the cared for person can sometimes ignore the experience and expertise carers bring to an issue. Often the symbiotic nature of the caring relationship is not recognised; so when the focus is on interventions for the cared for person the resulting impact on their carers is overlooked. There is no doubt that more research is needed on the role, needs and support for carers. But ther is also no doubt that the voice of carers needs to be captured across all health and social care studies even when the focus is on the cared for person. This report, from a workshop organised by the Independent Advisory Group on Carers and the NIHR School for Social Care Research, highlights the pivotal role carers play in the effectiveness of future health and social care-related research. Carers can be valuable partners, providing unique inputs into all stages of research design, from forming the research question to the methodology, analysis and in sharing the findings. Our voice as carers needs to become an integral part of all health or social care-related research studies. There are actions that research funders, research teams, the health and social care sectors, and carers can take to make this happen. This report highlights some of these but it is important that actions follow. The first step is to recognise carers as a distinct, diverse and valuable group in research. We welcome positive steps being taken to achieve the priorities set out in this report

Unpaid carers’ access to and use of primary care services

GPs and members of the primary care team have a pivotal role in supporting unpaid carers in their caring role and helping them to maintain their own health and well-being. This paper investigates the difference that caregiving makes to individuals’ access to and use of GP and primary care services. It is based on longitudinal analysis of carers’ contacts with GPs, and a review of the literature including evaluations of measures to improve primary care-based support for carers. Men increase their consultation rates with GPs when taking on a caring role. In contrast, women who look after someone in the same household and carry heavy caring responsibilities have relatively less contact with GPs than expected. According to the literature, carers report a range of difficulties accessing primary health care. A fivefold typology is described covering barriers arising from: professional responses to the carers’ role, the way services are organised and delivered, language or culturally held beliefs and practices, carer or care recipient characteristics, and unmet information needs. Various measures to improve carers’ access to primary care have been introduced to overcome these barriers, but robust evidence of cost and utility is required to judge their acceptability and effectiveness for both carers and GPs. Although good practice guides, quality standards and evaluation tools are available to help improve primary care support for carers, further investigation of carers’ help-seeking for health care, and the factors involved, is required to underpin the prospects for developing a genuine partnership between unpaid carers and health professionals

Evaluation of the whanau carers training programme delivered by LIFE Unlimited

In response to the needs of Maori informal carers, a training programme was developed for whanau carers in the Waikato region. It was delivered by LIFE Unlimited. It is a unique training programme in that it is community driven and focuses on informal caregivers who are Maori. The overarching aim of the whanau carers training programme is to provide increased training and support of informal carers. This report aimed to evaluate the effectiveness of the whanau carers training programme, including: the unique nature of the programme, the critical success factors, the barriers to success if any, and suggested improvements. The report concludes the programme has had a positive and definite impact upon the whanau carers. The evaluation team observed that the overall programme works very well and fulfils its stated obligations to the Ministry of Health. The programmes are delivered well, and are well received by the client group

Rationed Care: Assessing the Support Needs of Informal Carers in English Social Services Authorities

The passing of the Carers (Recognition and Services Act) 1995 was a step forward in trying to ensure that people who provide informal care to disabled, sick or elderly relatives or friends are properly recognised and properly supported. The Carers Act gave informal carers the right to an assessment of their own needs, and this article is based on a study into the impact of the legislation in four local authority social services departments. It is argued that the vision of supporters of the Carers Act, namely to achieve real benefits for many carers, has yet to be realised. The analysis draws on Klein et al.’s (1996) framework of service rationing strategies to demonstrate that decisions about priority setting and different forms of rationing of social care took place at three different levels: national government, local authority and front-line practitioner. Evidence is presented to show that some carers chose to impose rationing on themselves by reducing their demands. The article concludes with comments on the implications of rationing decisions for policy and practice

Strange Carers

The present comment focuses on the distinction between attachment as bond formation and expectations of availability and responsiveness (security) within attachment relationships. We enumerate key components of bonding and functions of carer secure base support. Our analysis has implications for design and suggests that robots are unlikely to serve effectively as sole carers. Even with robots as part-time carers, attachment-like bonds would likely focus on human carers. Similarly, although infants and children would certainly build expectations regarding the availability and responsiveness of robot carers, the quality of human care would probably be the determining influence on later development and competence. Notwithstanding their limitations of robots as attachment figures they have considerable potential to extend parental care and enrich infant exploration. The Sharkey’s paper and further consideration of robots as carers for infants, children, older adults, an

Social capital in the lives of young carers

The research sought to answer the following research questions: to what extent do different forms of social capital impact on current and future opportunities for young carers; to what extent can various agencies and significant others (including teachers, young carers' projects and friends) help young carers to identify and build on the types of social capital they identify as important to them

The NDIS one year in: experiences of carers in the Hunter trial site

The National Disability Insurance Scheme (NDIS) presents an unprecedented opportunity for Australians with permanent and significant disability to receive the lifelong support they need to pursue their goals and participate in their communities. The greater choice and control offered by the NDIS promises not only to benefit people with disability but also the family members and friends that provide informal support to people with disability, their carers. The first year of the four initial NDIS trials has produced significant achievements, but has also highlighted a range of key challenges. The National Disability Agency (NDIA) has been responsive to the challenges identified and has clearly stated its intention to continuously improve the Scheme based on stakeholder feedback during the trial period. Carers NSW has been closely following the rollout of the NDIS in the NSW trial site in order to identify any issues emerging for carers. While people with disability, not carers, are the focus of the NDIS, sustainable informal care arrangements will be critical for the Scheme to succeed. This paper draws on Carers NSW research, consultation and policy analysis from throughout the first year of the NSW trial. It summarises key issues arising for carers and intends to contribute to the ongoing refinement of NDIS design and implementation. Benefits for carers in NSW Carers NSW supports the introduction of the NDIS in NSW and acknowledges that it is already changing the lives of many people with disability and their carers for the better. Benefits experienced by carers in NSW include: • Significant improvements in the amount, quality, value and flexibility of support received by the NDIS participant since entering the Scheme; • Flow on benefits for carers, including the ability to return to work, reduced stress and less financial pressure; • Some funded supports directly supporting the caring role, including domestic assistance, respite and family therapy; and • Positive working relationships with NDIS planners. Challenges for carers in NSW While many carers in NSW have had positive experiences of the NDIS, a number of key issues have come to our attention. Understanding the NDIS Many carers in NSW – within and outside the trial site – are struggling to understand, and therefore to embrace, the NDIS. This is largely due to: • limited and inconsistent information; • unclear language; • uncertainty about the Scheme rollout at national level; and • inadequate communication with carers about what to expect. Carer recognition and assessment The NDIS policy framework recognises that: • The role of carers in the life of the person they care for should be acknowledged and respected; • Planners should determine whether the informal support provided by carers is sustainable and reasonable; and • Where appropriate, a plan should build the capacity of carers to provide support. While Carers NSW welcomes these key values, we have identified the following issues: • Treatment of carers by NDIS planners has varied and some carers feel their perspective has not been adequately taken into account; and • A separate conversation between the planner and the carer is only a possibility, not a formal entitlement for carers. Carer supports and services Carers of NDIS participants are likely to benefit from the funded supports provided to the participant, and the NDIS policy framework also allows for some supports to be funded especially to sustain informal care arrangements. However: • A large number of people with disability will not be eligible for the NDIS, and therefore they and their carers will not receive funded supports; • It is clear that the NDIS is not about carers, and that carers of NDIS participants are not entitled to referral or funded support in their own right through an NDIS package; • Carers of people with disability may no longer have access to Commonwealth funded carer supports outside the NDIS, since funding is being redistributed into the NDIS and Commonwealth Home Support Program; and • In NSW, people with disability who are not eligible for the NDIS, and all carers of people with disability, may no longer have access to State funded disability and carer supports in future, as the NSW Government will withdraw from providing disability services once the NDIS is fully rolled out. Carers NSW is highly concerned about the major gap in carer support that will result from current model and urgently calls upon the Commonwealth and NSW Governments to address this. Preparing and implementing the plan A number of capacity building initiatives are underway in NSW to prepare people with disability and their carers for the NDIS. However: • Not all carers are able to access these opportunities, and many carers still feel underprepared when they attend planning sessions; • Many carers feel that the NDIS has created more work for them, leaving them overwhelmed; • Many carers are finding NDIS plans difficult to read, understand and implement