Who cares?—Supporting parents in the care of children in Hong Kong

The paper addresses the following questions: Why are children placed in residential care? What problems do the parents have in caring for their children at home? What services have been used by the parents in seeking solutions to these problems? Are parents' personal resources so inadequate that the risk of removing a child into care must be taken?

The study involved a sampling of the parents of children who were placed in residential care facilities. The findings indicated that most children were placed in residential care because the parents lacked the tangible resources necessary for them to bring up the children themselves. The findings challenge the simplistic assumption that only children who are orphaned or of irresponsible parents are placed in residential care, and prompt social workers to reflect on the practical means to support parents in the care of children in Hong Kong.     

Listening and facilitating all forms of communication: disabled children and young people in residential care in England

ABSTRACT

Little research has been undertaken into how children with complex communication needs living in residential care are encouraged to express their views, be involved in decision-making, and importantly, make it known when they are unhappy. This group are often placed a long distance from home and can be some of the most vulnerable children in the care system. Ensuring they have access to a communication method, people who understand their communication and support to empower them to grow their capacity is not only a right and a safeguarding mechanism, it is also important in preparation for adulthood and for leaving care. This unique paper reports on the English arm of a European project, which aimed to devise the first international monitoring system to prevent abuse of disabled children in residential settings. Trained professionals examined how disabled children were heard, and encouraged to be involved in decision-making within 10 case-study residential settings. To aid international development of good practice, this paper focuses on positive aspects of practice. Examples are used to illustrate how all forms of communication can be encouraged and used positively to both protect and empower disabled children in residential care. Implications for practice are presented to support practitioners to create positive communication environments.     

Impact of Prior Home Care on Length of Stay in Residential Care for Australians With Dementia

ObjectivesTo assess the impact of home care on length-of-stay within residential care.DesignA retrospective observational data-linkage study.Setting and ParticipantsIn total there were 3151 participants from the 45 and Up Study in New South Wales, Australia with dementia who entered residential care between 2010 and 2014.MethodsSurvey data collected from 2006‒2009 were linked to administrative data for 2006‒2016. The highest level of home care a person accessed prior to residential care was defined as no home care, home support, low-level home care, and high-level home care. Multinomial logistic regression and Cox proportional hazards were used to investigate differences in activities of daily living, behavioral, and complex healthcare scales at entering residential care; and length-of-stay in residential care.ResultsPeople with prior high-level home care entered residential care needing higher assistance compared with the no home care group: activities of daily living [odds ratio (OR) 3.41, 95% confidence interval (CI) 2.14‒5.44], behavior (OR 2.61, 95% CI 1.69‒4.03), and complex healthcare (OR 2.02, 95% CI 1.06‒3.84). They had a higher death rate, meaning shorter length-of-stay in residential care (<2 years after entry: hazard ratio 1.12; 95% CI 0.89‒1.42; 2-4 years: hazard ratio 1.49; 95% CI 1.01‒2.21). Those using low-level home care were less likely to enter residential care needing high assistance compared to the no home care group (activities of daily living: OR 0.61, 95% CI 0.45‒0.81; behavioral: OR 0.72, 95% CI 0.54‒0.95; complex healthcare: OR 0.51, 95% CI 0.33‒0.77). There was no difference between the home support and no home care groups.ConclusionsHigh-level home care prior to residential care may help those with dementia stay at home for longer, but the low-level care group entered residential care at low assistance levels, possibly signaling lack of informal care and barriers in accessing higher-level home care.ImplicationsBetter transition options from low-level home care, including more timely availability of high-level care packages, may help people with dementia remain at home longer.     

Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.     

Community-based dementia care re-defined: Lessons from Iceland

Studies of families caring for persons with dementia living at home often reflect feelings of being forgotten and abandoned by the authorities to shoulder the responsibility for care-giving. This has increased interest in how formal services can better support these families. This article analyses how health and social care professionals envision the needs of families of persons with dementia living in the community. It also describes the contributions of the formal care system to these families. The study design was qualitative. It involved interviews with professionals (N = 20), field observations from the settings where they worked, and public documents addressing care-giving for people with dementia. Data were analysed using the framework method. The findings reflected how those providing services to persons experiencing cognitive changes mainly understood the services as specialised. They focused on the diagnosis and treatment of the individual with dementia. They considered other aspects of care, such as attending to practical issues of daily life, to be a private matter, for which the family was responsible. In later stages of dementia, specialised day programs become available, offering rehabilitation to motivate positive daily living—for both the person experiencing dementia and family-centred supporters. Professionals in the field described primary care, community-based healthcare and home care services as poorly equipped to support these families. Participants acknowledged that families were often under a lot of stress and might need more support earlier in the illness. However, they saw themselves as powerless. Towards the end of the data collection, services were being re-designed to emphasise the role of primary care. In light of its holistic and family-centred approach, primary care may be well placed to integrate relational understanding of living with dementia and specialised knowledge of dementia treatment.     

Care worker perspectives on the socio-emotional adjustment of orphans in residential homes

ABSTRACT

Orphans in Sub-Saharan Africa are often raised by relatives. Many end up in residential homes due to financial burdens on extended families. As a result, the socio-emotional development of orphans may be adversely affected. This paper explores care workers’ perspectives on the socio-emotional adjustment of orphans in residential homes. Qualitative methods were employed in which eleven male and female care workers from three residential homes for orphans were interviewed. The data was analysed using Thematic Analysis.Results suggest that non-care related duties in the home interfere with care workers’ responsivity to children. Relationships between care workers and children were positive; based on emotional support, listening, responsiveness, and trust. However, orphans tended to have difficulties adjusting to the residential home, expressing emotions, and making friends. Results also showed that orphans continue to deal with the loss of their parents and may, as a result, act in aggressive ways. Recommendations include improved access to psychosocial support and easing care workers’ workload to enable them to effectively aid orphans in navigating their socio-emotional challenges. The paper illustrates key insights into the socio-emotional adjustment of orphans from the perspectives of care workers caring for them.     

Staff perceptions of end-of-life care in long-term care

OBJECTIVE: Although residential care/assisted living facilities and nursing homes have increasingly become a significant site of death for older Americans, little is known about staff perceptions of end-of-life care, perceived need for improvement in care, and differences by type of setting. DESIGN, SETTING, AND PARTICIPANTS: Ninety-nine staff provided their perceptions of end-of-life care for 99 decedents from 74 residential care/assisted living facilities and nursing homes in four states as part of a larger cohort study. Staff were interviewed retrospectively regarding care provided during residents' last month of life. MEASUREMENTS: Staff reported on 11 areas of end-of-life care, describing the importance of each area and the level of improvement they felt was indicated. Weighted "need for change" scores were calculated as the product of perceived importance and need for improvement. RESULTS: Both residential care/assisted living and nursing home staff reported a need for more staff education and nursing assistant time, as well as more use of volunteers. The two lowest ranked items for both facility types were involvement of hospice and encouragement for staff to attend funeral services. Nursing home staff perceived a greater need for improvement than residential care/assisted living staff in all 11 areas. CONCLUSION: Results underscore the staffing demands of end-of-life care across facility types, and staff desires to be able to provide quality care throughout the dying process.     

Emotional disturbance and substance abuse in youth placed in residential group homes

Residential group homes are increasingly important components of the system of mental health care for children and adolescents. However, they often do not have sufficient resources to provide active therapeutic programs as a result of their usual missions in serving abandoned or runaway youth. The authors studied 299 youth, ages 12 to 17 years, in five large residential group home programs in South Carolina. The instruments administered were (1) the Center for Epidemiological Survey—Depression Scale (CES-D), (2) a brief substance abuse questionnaire, and (3) questions about socioeconomic status, previous placements, and family relationship variables. A significant percentage scored above conservative clinical cut-off scores for the CES-D (51.7% scored 16 or above and 33.6% scored 23 or above). The youth also had significant levels of substance abuse problems. However, these variables were not predictive of previous multiple out-of-home placements (runaway behavior was predictive). These findings support the importance of addressing the clinical needs of youth in these programs.     

Facilitating choice and control for older people in long-term care

The community care reforms enabled some older people with severe disabilities to remain at home with domiciliary care services, as an alternative to institutional admission. This paper explores the extent to which the reforms actually enabled older people receiving domiciliary care to have greater choice and control in their daily lives than older people living in institutions. Findings are reported from a comparative study carried out in Greater Belfast, Northern Ireland, that determined the extent to which the subjective quality of life of older people – particularly autonomy – varied according to the type of setting. The older people were interviewed using a structured interview schedule and subjective autonomy was assessed using a measure of perceived choice. The measure consisted of 33 activities relating to aspects of everyday life such as what time to get up, when to see visitors or friends, and how much privacy was available. Qualitative data were also recorded which informed on the older people's perspectives on their own lives, particularly the extent to which they exercised choice on a daily basis. Two‐hundred and fourteen residents in 45 residential and nursing homes were interviewed, as were 44 older people receiving domiciliary care in private households. The study found that older people living in institutions perceived themselves to have greater decisional autonomy in their everyday lives than did older people receiving domiciliary care. Indeed, it was clear that living at home did not ensure that one's decisional autonomy would be supported. However, living alone may facilitate exercising a relatively higher degree of autonomy when living at home. Whilst the community care reforms have provided some older people who have severe disabilities with the option of receiving care at home, this has not necessarily enabled them to have greater choice and control in their everyday lives than older people admitted to institutions.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

Children's Participation in Child-protection Processes as Experienced by Foster Children and Social Workers

Children in foster care often have no means of influencing matters that concern them, and can easily become outsiders in their own lives. The United Nations Convention on the Rights of the Child enshrines the rights of capable children to express their views freely in matters affecting them and to be heard in any judicial or administrative proceedings concerning them. The aim of this study is to analyse foster children's participation in child welfare processes in different time periods and contexts from the perspective of children and social workers. The data comprise semi-structured interviews of eight children and young people aged seven to 17 in family foster care, as well as interviews of four child welfare social workers. Ethical questions were taken carefully into account. The results suggest that participation in matters concerning them is very significant to children, although they do not always want be active participants (e.g. in meetings). The children hoped that social workers would take a genuine interest in them, listen to them and take their opinions and wishes into consideration. Children sought true and essential information about the reasons for placements and the plans for their future. They felt they were better heard and more able to influence their own affairs after being placed in a foster home than during earlier phases of services. The study identifies many obstacles in children's participation at different systemic levels. Children's loyalty to their parents may prevent them from expressing their opinions. According to social workers, the most serious obstacles in participatory work with children are related to a lack of human and time resources. Social workers need time, work practices, skills and practical wisdom through which children's personal experiences, opinions and wishes can be better heard. They also seek support in handling the emotional aspects of child-protection work and suggest some other measures to develop their work.     

Comparing and contrasting the role of family carers and nurses in the domestic health care of frail older people

Care in the community has been constructed on the basis of professional support for carers who, as a result of community care policy that has released highly dependant people from residential care and long-stay wards, are carrying out a wide range of tasks, including complex health care activities. The present paper examines the health care activities currently undertaken by family carers and the way in which they work with, and are supported by, professional nurses in the home. It compares and contrasts the approaches of both groups to care-giving for this client group. The authors conclude by making some suggestions for improving the way in which family carers and nurses work together in the home.     

Continuity of care for patients on a waiting list for institutional long-term care

The aim of this study was to examine patients' satisfaction with continuity of care while on a waiting list for residential care or nursing home care. Two hundred and seventy-eight patients participated in the study, all living in the community setting of two cities in the Netherlands. These patients were positively assessed and on a waiting list for admission in a nursing home or a residential home. The respondents were interviewed by telephone, using a structured questionnaire. From the results, it appeared that people waiting for residential care are in general over 80 years of age and dependent on help for their daily activities. They used several types of home care facility, such as home help services, home nursing and meals on wheels. Patient satisfaction was moderately high as regards the supply of substitute care and the length of time it took to receive a home care package. There was dissatisfaction, however, with the coordination of care and the amount of information on procedures regarding the waiting list. Patients on the waiting list also reported a lack of guidance in case of problems and would not know where to turn to if their situation became more severe. The establishment of a service desk to provide information or real help in these circumstances is recommended.     

Aging, health and place in residential care facilities in Beijing, China

In recent years, residential care has become an alternative option for elder care in Beijing, China. Little is known, however, about the well-being of elderly residents and the relationship between their health and living in residential care facilities (RCFs). Hence this research aims to understand the well-being of elderly residents in RCFs and how the environment of RCFs affects elderly people's everyday activities and health. The concepts of therapeutic landscapes, active aging, and well-being contribute to understanding the relationships among aging, health, and environment within RCF settings. Qualitative data from 46 in-depth semi-structured interviews with RCF managers, elderly residents, and family members in Beijing were transcribed and analysed using the constant comparative method. The results show that most of the elderly residents are satisfied with their lives in RCFs, but a few of them feel isolated and depressed after their relocation. Each RCF, as a place with its unique physical and social environment, has a significant influence on the elderly residents' physical and psychological well-being. Individual factors such as characteristics of elderly residents, their attitudes on aging and residential care, and family support also play important roles in their adaptation and well-being after relocation from home to RCFs. Although this study focuses on residential care at the local level, it sheds light on future research on geographical and socio-cultural meanings of elder care at local, regional, and national levels in China.     

Family ties as viewed by child care and treatment personnel in residential settings for children aged 6–14

This research examines practices with respect to preservation of family ties in residential settings from the viewpoint of the child care and treatment personnel. Interviews were held with 114 staff members at 11 residential schools for children aged 6–14 years. From these it was learned that the programs are characterized by fortuitous connections among the parties involved (the child, his family, the residential treatment personnel and the professionals in the child's home community), non-assumption of responsibility and planning by personnel in the residential setting and in the community, and a gap between the stated policy of encouraging the family ties and the perception of the staff as to how the preservation and strengthening of these ties may be accomplished. The residential setting is not perceived by those interviewed as a center for family involvement.     

Siege and Response: Reception and Benefits of Residential Children’s Mental Health Services for Parents and Siblings

This paper presents the results of a qualitative study with 29 parents of children who have been in residential mental health care. It examines three main patterns identified by parents: (a) the importance of respite, (b) feeling welcomed and understood, and (c) improved personal and family functioning. It argues that benefits for parents and siblings of placed children deserve equal valuation with the needs of children in residential care and that the processes of achieving such gains are independent considerations from creating systems of care for troubled children or engaging family members in treatment plans for these children.

How do sibling placements differ from placements of individual children?

A secondary analysis of 140 consecutive out-of-home placements of children up to eleven years of age in the Netherlands taking into account their sibling status showed that children placed singly, with other siblings at home, differ from children placed together with siblings in their background characteristics. Children placed individually more often have severe personal problems, while children placed together with siblings frequently come from families with one or two parents going through a crisis. Researchers of sibling placement have to be aware of a possible effect of pre-selection, when comparing individually placed children with children placed in care jointly.The authors would like to thank Wendela de Buck, Irene de Croock, and Franska de Rijk for their help in the preparation of this study.     

What Factors Contribute to the Resilience of African-American Children Within Kinship Care?

Research about African-American children who overcome adversity to adapt successfully within kinship care is virtually nonexistent. To address this knowledge gap, we studied the caregivers of 30 African-American children residing in kinship care homes to determine why some children succeed in their placements while others do not. In this qualitative investigation, we interviewed the kinship caregivers of resilient and nonresilient children. Resilient children generally resided in families characterized by more structure, clear boundaries, and well-defined roles. Kinship caregivers indicated that the support they received from extended family was helpful and promoted positive child outcomes.     

Client-centred,community-based care for frail seniors

Compared with nursing home care, community care, which is often viewed in Canada as care at home, is assumed to be best for older adults with chronic disease or disabilities since it is seen as client-focused and less costly. As the number of frail seniors living in the community increases, governments in Canada seek to provide alternate models of nursing home care. As part of a larger initiative meant to increase the scope of community programmes, a demonstration project was conducted in western Canada to evaluate the implementation of client-centred, community-based residential care with individuals requiring nursing-home-level care. The present authors explore two main implementation challenges: whether care that is responsive to individual preferences can be provided to people who cannot assume active decision-making roles; and whether care can be centred in the community if people are living in residential care settings rather than in their own homes. Focus groups were conducted with two key stakeholder groups with varying informal (family members) and formal (programme staff) relationships with residents living in three new programmes. From content analysis, the programmes appeared successful in conveying the importance of recognising residents as individuals and of keeping them connected to the community, but fell short of implementation expectations. Three themes illustrate the challenges: (1) engaging with others in a care partnership; (2) responding to residents' preferences and care needs with limited resources; and (3) maintaining residents' connections with the community. To improve the feasibility of these programmes, some changes could be pursued within existing financial resources. However moderating the funding to bring it somewhat closer to nursing home levels could support the sustainability of community-situated programmes for frail seniors.