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.     

Driving outcomes: learning to drive,resilience and young people living in residential care

There are continuing concerns about the experiences offered to older adolescents being looked after (‘in care’) in the UK and, especially, to care leavers. Questions are asked about the limitations of State care compared with normal family life. This paper reports on an initiative to provide driving lessons to a group of six young men living in residential homes in one city. It links with resilience theory – how individuals can have relatively good outcomes despite early adversity. A qualitative study was undertaken to explore the effects of the initiative, including individual interviews with young men, heads of homes in which they lived and children's services managers. The overall results indicated that the initiative was very worthwhile. The lessons were a significant part of young people's lives. Possible effects on young people were divided into personal, instrumental and social. Benefits were reported from all parties concerning young people's self‐esteem and self‐confidence, as well as in forging close relationships with supportive adults. Driving would not be seen as a panacea for complex personal histories and structural problems, yet this small experiment suggests that driving lessons could be of disproportionate benefit and there is a moral obligation to provide them in any case.     

Collecting feedback as a tool to reduce care paralysis: something for family group conferencing coordinators?

Family group conferencing (FGC) coordinators in public mental healthcare are confronted with clients who have little faith in professionals and organizations, who hold off decisions in their family life, who avoid care and who sometimes behave in a hostile manner. A lack of initiative to deal with their situation is not only reserved for clients – all bystanders, including professionals, can suffer from it. The multiplicity and severity of the client's problems lead to a situation wherein everyone involved waits for the initiative of the other. The independence of the FGC coordinator – a fellow citizen, who is free of organizational loyalties and comes to assist other citizens in establishing a plan – seems to work well with the client group of the public mental healthcare. However, the coordinator cannot always prevent deferral or failure of conferences. Drawing on empirical and theoretical findings, this paper considers the possibility of collecting feedback as a way to contribute positively to the alliance between FGC coordinators and those for whom a conference is deployed. We highlight findings from three case studies that centred on multiproblem families. The findings indicate the importance of feedback theory for FGC coordinators in enhancing trust and engagement.     

Contact between birth parents and children in kinship care in a sample from Spain

Within the context of kinship care, the main objectives of this work are to study the characteristics of contact between foster children and their birth parents, and their relationship with key variables of fostering, the children and their kinship caregivers. The sample included 189 children from Spain and their kinship families. A semi‐structured placement interview and two scales relating to the child–caregiver relationship and child's psychological adjustment were used with the kinship families. The results revealed a significant percentage of foster children who had no family contact. Various visit types, frequencies and durations were described. Kinship care with contact, compared with placements without contact, was frequently characterized by the absence of professional supervision, and an affectionate child–caregiver relationship; moreover, children with contact were perceived to have fewer serious behaviour and socio‐emotional problems and a greater probability of family reunification. The regression analysis showed that the main predictors for how caregivers assessed contact were the children's emotional reaction during visits and the quality of the relationship between the kinship families and the birth parents. These results suggest the need for further research about contact, which will certainly have a major impact on professional intervention with these families.     

Engaging Experts: Expanding Participation and Enhancing Research in Chinese Eldercare Institutions

Due to the myriad factors straining China’s traditional family-based eldercare system, today unprecedented numbers of older adults are turning to institutions for caregiving needs. As researchers and policy makers organize conferences, analyze trends, and allocate resources, the subjective experiences of elders themselves are often forgotten or ignored. While providers recognize that institutionalized elders are at an increased risk for mental health issues, most cite personnel and resource shortages as insurmountable barriers to provision. Using examples from ethnographic research in Chinese eldercare institutions, this article examines the link between participation and mental health for contemporary Chinese elders and makes a case for expanding the role of elders in research in order to improve both the experience and understanding of institutional eldercare.     

The Impact of In-Home Services Utilization on the Institutionalization of Older People in Korea

As a result of aging populations, institutionalization of older people is creating an increasing financial burden in many countries. The purpose of the present study was to explore the impact of in-home service utilization on institutionalization. The subjects were newly certified as eligible for long-term care insurance between January and February 2009 in Korea. The follow-up period was 40 months, to April 2012. We used logistic regression models to identify factors influencing the transition to institutional service, adjusting for gender, age, living status, income level, activities of daily living, and chronic disease. The institutionalization rate was estimated to be 17.3% over 40 months. The interval from transitional living to institutionalization was 36 ± 8 months. Risk factors of transition to institutional services are being female, having advanced age, living with friends or cousins, getting dementia, and not using in-home services. We determined that institutionalization is mitigated by use of in-home services. Therefore, supplying appropriate in-home services to current nonusers would help to greatly reduce the rate of institutionalization of older people.     

Schools must include faculty and staff in sexual violence prevention efforts

Creating a normative campus environment intolerant to sexual violence is important for prevention. While prevention initiatives focusing on students are vital, faculty and staff have a central role in supporting and sustaining a comprehensive strategy for preventing campus sexual violence. Nationwide, colleges and universities recently implemented campus climate surveys. At Emory, we decided to survey faculty and staff as well as students, motivated by our use of an ecological framing of campus sexual violence. Faculty and staff are long-term members of the community, and can provide stability and continuity that reinforces prevention efforts prioritized for students. We recommend that schools use a trauma-informed approach to guide the involvement of faculty and staff in prevention. We encourage colleges and universities to consider the experiences and needs of their faculty and staff, as professionals who serve as leaders on campus and as those who guide students through their academic experiences.     

‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom

Adult social care services in the United Kingdom have undergone a period of transformation over recent years, characterised by a drive towards personalised care. Concurrently, social care budgets have been significantly reduced. This study aimed to explore the daily living experiences of adults with mild/moderate intellectual disabilities, who are at risk of no longer meeting eligibility criteria for statutory support. Focus group discussions, which included both people with intellectual disabilities and support workers, were analysed thematically. Two broad themes are presented: independence and agency; and social capital and well-being. While some participants echoed ideas central to the personalisation narrative, a number of contextual barriers to achieving greater independence and agency were discussed. Moreover, greater independence was not a desired goal for all participants. The findings highlight the potential mismatch between personalised social care, as delivered within significant budget constraints, and the needs of adults with intellectual disabilities.