The experience of sole mothers balancing paid work with care for a child with a disability

There are increasing numbers of families in Australia headed by sole parents, but little is known about the experiences of those who also care for a child with a disability. Additional caring responsibilities have previously been shown to impact on the work participation of parents. This study involved qualitative analyses of interview data conducted with sole mothers with school‐aged children with disability (N = 11). Thematic analysis revealed four themes that enabled and supported participation in the workforce: social support; managing appointments; characteristics of the workplace; and the role of the school. Results suggest the importance of practical help from family and friends in facilitating participation in paid employment. Additionally, the importance of flexible appointment scheduling on the part of service providers was highlighted, as well as the importance of workplace flexibility and supportive workplace cultures. Such factors were important in supporting sole mothers to balance work with care, with important implications for personal and family wellbeing.     

What is a person‐centred approach? Familiarity and understanding of individualised funding amongst carers in New South Wales

Person‐centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person‐centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person‐centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person‐centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person‐centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.     

Learning from service users’ involvement: a research about changing stigmatizing attitudes in social work students

Abstract

Stigmatizing attitudes can create barriers to forming partnership with service users and to developing people’s empowerment. So, social work education must help students overcome their stigmatizing attitudes. A useful strategy for bringing about changes is service users’ and carers’ involvement in social work education, providing students with direct exposure to stigmatized people in roles that emphasize their humanity and strengths, rather than their deficits. The present study assessed the impact of a one-day meeting with service users and carers members of self-help and mutual-aid groups on freshman social work students. Students completed an adapted version of Attitudes to Mental Illness Questionnaire before and after the meeting, and answered several qualitative questions. Data comparisons suggest that after face-to-face contact with service users and carers, social work students showed reduced stigmatizing attitudes. Implications for further research and social work education are discussed.     

Supporting foster and kinship carers to promote the mental health of children

The majority of children and young people removed from the care of their parents by the state of Victoria, Australia, reside in foster or kinship care. These children have experienced a broad range of adverse conditions and are up to 4 times more likely to experience problems with mental health than their mainstream peers. This paper draws on the perspectives of foster and kinship carers, describing the disconnection between their role as mental health advocates and their interest in early intervention in a field which is dominated by crisis and the historic marginalisation of foster and kinship carers. Thirty‐one foster and kinship carers across greater metropolitan Melbourne, Australia, contributed to this study through interviews and focus groups. Participants demonstrated a practical understanding of mental health and an ability to identify a range of conditions that have an adverse impact on the mental health of children and young people in their care. The paper concludes that there is a lack of systemic support and even a range of barriers that affect the capacity of foster and kinship carers to promote the mental health and well‐being of the children and young people in their care.     

Complex home care: challenges arising from the blurring of boundaries between family and professional care

Over the last 50 years, increasingly complex care (such as tracheostomy management, dialysis or enteral feeding) has shifted from hospital to home, with a concomitant rise in patient self-management and care given by family members. Recognition of the importance of the contribution of family care to the health system is also growing. This article reports the findings of a New Zealand study which explored the experiences of family carers who manage technical health procedures at home. It then draws attention to some broader issues raised by shifting complex care from professional management in hospital settings to family care at home, namely the ways in which complex home care blurs the boundaries between professional and family care (creating the ambiguous position of the expert carer) and questions of safety and responsibility in family care. We also discuss the implications for policy around family caregiving in New Zealand. Given the potential physical and mental health impacts of caring, it is time for renewed consideration of what family carers should be expected or allowed to manage and how the health system can support them in their important role.     

‘I couldn’t just entirely be her sister’: the relational and social policy implications of care between young adult siblings with and without disabilities

Research has commonly explored siblings of people with disabilities’ roles in care for their brothers or sisters with disabilities. Social policy has also commonly framed young adult siblings of people with disabilities as ‘young carers’. However, there has been less consideration of the implications of care for the relationship shared between young adult siblings with and without disabilities and of what this may mean for social policy. What do different types of care mean for sibling relationships? What are the relational and social policy implications of care between siblings? Drawing on a qualitative study of 25 siblings with disabilities and 21 siblings without disabilities aged 15–29, this article explores how young adult siblings perceive, talk and act with regard to the different types of care enacted between them. The article identifies how, during young adulthood, some types of care can endanger siblings’ capacity to feel like siblings and discusses ways that young adult siblings talk and act in order to – as best they can – keep their role within the bounds of a normative sibling relationship. The findings are discussed in light of implications for social policy, particularly with regard to seeing siblings of people with disabilities as ‘young carers’.     

The Impact of the Physical Home Environment for Family Carers of People with Dementia: A Qualitative Study

Background: The majority of people with dementia are cared for by their families at home. This study aimed to elicit family carers' perceptions on home environmental aspects and strategies with the view to identify barriers and facilitators when caring for a person with dementia at home.

Design and methods: Thirteen co-resident family carers were engaged in semi-structured in-depth walking interviews. Interviews were recorded, transcribed and analysed using thematic analysis.

Results: Home environments can pose a number of challenges and opportunities. Aspects of the architectural and interior environment (e.g. size, condition, layout and accessibility, familiarity) are perceived as important (Theme 1) as well as a plethora of environmental strategies that encourage independence and comfort at home (Theme 2). Carers' scepticism, timing, costs, property characteristics and mistrust to services are some barriers to implementing environmental strategies (Theme 3).

Conclusions: Carers improvised solutions via trial and error and need further education on strategies to create an enabling and comfortable home environment.     

Sustainable Caregiving? Demands Upon and Resources of Female Carers of Adults with Intellectual Disability

Female carers of adults with an intellectual disability are increasing in our communities as those with intellectual disability live into middle and old age. Twenty-seven carers between the ages of 45 and 85 years responded to questionnaires about demands, resources, and their health. Almost all were in the clinical range on the measure of psychological functioning. Demands contributed significantly to poorer functioning; however, other measures did not. The women in this study appeared to underreport the level of difficulties they experienced. The caregiving role undertaken by these women does not appear to be sustainable under their current circumstances.     

Halfway There? Policy,Politics and Outcomes in Community Care

The community care reforms which followed the 1989 White Paper "Caring for People"were apparently focused on addressing the needs of people requiring long-term care, and on achieving improved outcomes and better quality of life.
The agenda set out by the White Paper was for community care in the next decade and beyond. Half way through this decade, we question the extent to which the objectives of promoting choice and independence for users and carers have been achieved. The paper draws particularly on a programme of monitoring conducted jointly by the Nuffield Institute for Health and the King's Fund, based on national and local focus groups meeting over a two-year period. It proposes a framework for evaluation which consists of four components: the definition of desired outcomes; specification of service systems necessary to deliver such outcomes; promotion of access to services; and the development of supporting operational policies and resource allocation mechanisms.
This framework offers a substantial step beyond much of the monitoring of the community care reforms which has taken place to date. This has assessed progress largely in terms of the establishment of new systems and processes. We conclude that such changes were essential building blocks for delivering better-quality community care services, and in the short term it may have been legitimate to view their establishment as proxies for progress towards delivering user-centred services. However, monitoring and evaluation should now be increasingly oriented towards ensuring that these changes are in fact producing the desired service outputs and urn outcomes. We propose that our framework offers one such way forward.     

Older Carers of Adults with a Learning Disability Confront the Future: Issues and Preferences in Planning

The Valuing People White Paper (Department of Health, 2001)requires services to secure a plan for all service-users withlearning disabilities living with older carers and promisesthem and their families more choice and control over how andwhere they live. This paper examines the views of the oldercarers (aged over seventy) of sixty-two adults with a learningdisability about planning for the future. Fifty-six took partin interviews in their own homes and six completed a questionnaire.All carers were white and recruited from one local authorityin response to the requirements of the White Paper. Findingsindicate that a significant proportion (thirty-four—55per cent) is either not ready or is unwilling to make futureplans. Barriers to planning include a perceived lack of needdue to the existence of two carers, a lack of awareness of timescalesinvolved in securing housing, difficulties in letting go, alack of confidence in available housing options, and the existenceof mutually supportive relationships. The findings show a needfor a proactive approach to information and support provisionto enable these families to work through a process of makingplans for the future. This is essential to prevent the needfor emergency placements in response to crisis and in turn toensure that adults with learning disabilities have genuine choiceand involvement in how and where they live.