Becoming the mother of a child with disabilities: a systematic literature review

The transition to motherhood starts early in pregnancy and is completed when the mother feels competent in caring for the infant. Becoming the mother of a child with disabilities is demanding as their needs are complex. The aim of the review was to appraise completed qualitative and quantitative reports on the challenges of mothers of children with disabilities regarding their own transition to motherhood. A review of the literature was carried out through, first, a computerized search strategy to identify relevant studies from selected databases and, second, quality appraisal and thematic analysis of selected studies. The transition to motherhood of children with disabilities takes place in the inside world at home, the outside world external to home and the ‘going-between’ world of travelling between the two worlds. The mothers are challenged at home to integrate basic infant care with technical care of their children. In the outside world they often struggled to ensure that their children got the necessary professional care. Travelling between their homes and healthcare services posed many problems.     

The Effects of Children’s Health on Mothers’ Employment

When children have health problems, mothers face a tradeoff between the decision to work to satisfy increased expenses and the decision to stay home to fulfill enlarged caregiving needs, especially for children with chronic conditions. This research used an instrumental variables approach to investigate the labor market consequences of mothers due to burden to care children with health problems. We found mothers’ employment probability increased by 0.9% for every $100 of increased out-of-pocket medical spending, while employment probability fell by 1.0% for every half day of school/day care a sick child missed. By correcting for endogeneity we addressed a potential empirical bias. Analyses by subgroups showed that Hispanic mothers were less likely to work in the labor market with high caregiving burden. We also found that the effects of time burden on labor market outcomes were magnified for black mothers.     

Mothers' experiences, resources and needs: The context for reunification

This paper extends prior scholarship regarding the characteristics of mothers involved with the child welfare system. In-person interviews were conducted with a statewide sample of 747 mothers, 318 with children remaining in home and 429 with children in care, to examine their socio-demographic and psychosocial characteristics as well as service needs. Mothers were mostly impoverished, struggling to meet basic needs, and coping with early trauma, mental health problems, substance abuse and domestic violence. Almost half reported an annual income of less than $10,000 and 70% were unemployed, but few received public benefits with the exception of food stamps. Mothers with children in care experienced greater economic hardship than mothers whose children remained in home. The implications of the findings are discussed.     

A Children's Standpoint: Needs in Out‐of‐Home Care

This article discusses research reported in ‘The Needs of Children in Care’ ( Mason and Gibson, 2004 ) in which children participated in defining their needs in out‐of‐home care. In this study a central research presumption was that children are knowledgeable about their own needs. The methods used to facilitate the involvement in the project of children and adult stakeholders in out‐of‐home care are described. Also described are findings from the research which identified that of prime importance to the children were their connections with others and their agency in their own lives. These findings are compared with findings from the narratives of the adult stakeholder groups. Finally, the implications of the findings, for improving children's participation in decision‐making around their needs in care are considered in the context of broad adult–child social relations in the care system.     

Reimagining nursing homes: the art of the possible

Long-term care (LTC) needs to be reconceptualized. The current efforts to reinvent the nursing home perpetuate a flawed model of care. The heritage of the nursing home as the dominant model for LTC needs to be reexamined. The basic LTC building blocks--housing, services, and medical care--can be combined in various ways to meet consumers' needs and preferences. We need innovative solutions that can offer reasonable service while recognizing the value of acceptable risk taking. Modest personal care should not come at the price of surrendering one's autonomy.     

Reimagining Nursing Homes: The Art of the Possible

Long-term care (LTC) needs to be reconceptualized. The current efforts to reinvent the nursing home perpetuate a flawed model of care. The heritage of the nursing home as the dominant model for LTC needs to be reexamined. The basic LTC building blocks—housing, services, and medical care—can be combined in various ways to meet consumers' needs and preferences. We need innovative solutions that can offer reasonable service while recognizing the value of acceptable risk taking. Modest personal care should not come at the price of surrendering one's autonomy.     

The supportive community: a new concept for enhancing the quality of life of elderly living in the community

This study examines supportive community programs in Israel, which aim to improve the quality of life of the elderly. These innovative programs pool existing resources to provide a benefits package that includes medical services, an emergency call switchboard, a "neighborhood facilitator," and social activities. Data were collected in 2000-2001 using qualitative and quantitative methods. The program provides specific services to meet needs that otherwise are not adequately addressed. The major contributions of the program reported by the members was increasing their personal security (two-thirds), easing the burden on their children (one-third), and enabling them to remain at home (one-quarter). The supportive community program enriches the variety of services available, thus providing the elderly with the choice of staying within their familiar surroundings of their homes and neighborhoods. This model appears to be both a cost-effective way to facilitate aging in place and a way to meet many of the elderly's essential needs, thereby maintaining their quality of life.     

Psychological Functioning Through the First Six Months in Mothers Adopting from China: Special Needs Versus Non–Special Needs

ABSTRACT

This paper describes research investigating maternal adjustment to parenthood via special needs and non–special needs adoption from China. China's adoption system has a program for adoption of children with special needs and those without and both have remained top sources for intercountry adoption. Participants were 46 women who were surveyed at six weeks before, six weeks after, and six months after adopting a child. The psychological functioning of mothers adopting from China was assessed using the Beck Depression Index, the Brief Symptom Inventory, and the Edinburgh Postnatal Depression Scales. Mothers adopting children without special needs reported higher levels of depression, anxiety, and adjustment problems at clinical levels six weeks following the adoption. Mothers adopting children with special needs reported positive adjustment and low psychological dysfunction at all three time points. These results suggest that mothers pursuing a non–special needs adoption route are at greater risk for adjustment and psychological difficulties post-adoption. Mothers adopting special needs children may be better prepared prior to the adoption and may receive more support after returning home.     

Using a logic model to evaluate the Kids Together early education inclusion program for children with disabilities and additional needs

Despite clear evidence that learning and social opportunities for children with disabilities and special needs are more effective in inclusive not segregated settings, there are few known effective inclusion programs available to children with disabilities, their families or teachers in the early years within Australia. The Kids Together program was developed to support children with disabilities/additional needs aged 0–8 years attending mainstream early learning environments. Using a key worker transdisciplinary team model, the program aligns with the individualised package approach of the National Disability Insurance Scheme (NDIS).AimThis paper reports on the use of a logic model to underpin the process, outcomes and impact evaluation of the Kids Together program.MethodsThe research team worked across 15 Early Childhood Education and Care (ECEC) centres and in home and community settings. A realist evaluation using mixed methods was undertaken to understand what works, for whom and in what contexts. The development of a logic model provided a structured way to explore how the program was implemented and achieved short, medium and long term outcomes within a complex community setting.Discussion and conclusionKids Together was shown to be a highly effective and innovative model for supporting the inclusion of children with disabilities/additional needs in a range of environments central for early childhood learning and development. The use of a logic model provided a visual representation of the Kids Together model and its component parts and enabled a theory of change to be inferred, showing how a coordinated and collaborative approached can work across multiple environments.     

The Supportive Community

Abstract

This study examines supportive community programs in Israel, which aim to improve the quality of life of the elderly. These innovative programs pool existing resources to provide a benefits package that includes medical services, an emergency call switchboard, a “neighborhood facilitator,” and social activities. Data were collected in 2000-2001 using qualitative and quantitative methods. The program provides specific services to meet needs that otherwise are not adequately addressed. The major contributions of the program reported by the members was increasing their personal security (two-thirds), easing the burden on their children (one-third), and enabling them to remain at home (one-quarter). The supportive community program enriches the variety of services available, thus providing the elderly with the choice of staying within their familiar surroundings of their homes and neighborhoods. This model appears to be both a cost-effective way to facilitate aging in place and a way to meet many of the elderly's essential needs, thereby maintaining their quality of life.     

Transnational migration and the commodification of eldercare in urban Ghana

ABSTRACT

Over the past 20 years, organizations to provide commercial nursing services, mainly to the sick and debilitated elderly, have sprung up in Accra, Ghana. This article assesses the degree to which transnational migration has generated social changes in ageing at the level of everyday practices. It argues that a range of social actors differently involved in transnational migration has created and sustained a market for home nursing agencies in Ghana through diverse processes involving the imagination of care work abroad, complex negotiations between the elderly at home and their anxious children abroad, increased financial resources among the middle class and the evaluations of western eldercare services by return and current migrants. These dynamics illustrate the complexity of the role of transnational migration in generating social change and highlight the significance of the needs of local families and the role of the imagination in shaping social remittances from abroad.     

Interprofessional Client-Centered Reasoning Processes in Home Modification Practice

We investigated the complex reasoning processes of professional home evaluators involved with home safety assessments. Twenty evaluators with varied professional training engaged in in-depth qualitative interviews. Two primary themes emerged: integrating expertise and tailoring interventions. Within these themes, evaluators expressed differences and similarities in how they obtained information, developed interventions, and addressed professional-client interactive reasoning as they identified needs. We propose an adapted ecological model to describe best practices for personalizing home modifications through an interprofessional lens. Differences among professional home evaluators reveal unique, yet overlapping reasoning processes. Interprofessional teams may better meet the holistic needs of home modification consumers.     

Health Status,Living Arrangements,and Service Use at 100: Findings From the Oporto Centenarian Study

ABSTRACT

This paper describes the sociodemographic characteristics, health status, and service use of centenarians living in the community and centenarians residing in an elder care facility/nursing home and examines their main differences. Participants were 140 centenarians from the population-based Oporto Centenarian Study (M_age = 101.2; SD = 1.6). Main findings revealed that the majority of the centenarians lived at home with their family members (57.9%). Increased health care needs, living alone, and family caregiving constraints were the most common reasons for entering a nursing home. Community-dwelling centenarians were cared for mostly by their children and were less dependent and in better cognitive health than those who resided in a nursing home. Differences were found in the pattern of health service use according to the centenarians’ residence, ability to pay medical expenses, and dependency level. Findings highlight the need for an accurate assessment of caregiving support systems, particularly family intergenerational duties, and of the factors constraining the access and use of health and social services. Policy makers may be guided by the insights gained from this research and work toward improvement of support options and removal of barriers to service access.     

Expanded medical home model works for children in foster care

The Illinois Child Welfare Department implemented a statewide health care system to ensure that children in foster care obtain quality health care by providing each child with a medical home. This study demonstrates that the Medical Home model works for children in foster care providing better health outcomes in higher immunization rates.These children used the health care system more effectively and cost-effective as reflected in the higher utilization rates of primary care and well-child visits and lower utilization of emergency room care for children with chronic conditions.     

Listening to the voices of children: understanding the human rights priorities of children with disability in Vanuatu and Papua New Guinea

In developing countries, children with disability lack basic services yet their voices are missing in the development agenda. This article reports on research to investigate the human rights needs and priorities of 89 children with disability aged 5–18 years in Vanuatu and Papua New Guinea. An accessible and inclusive research method was developed to enable children with diverse disabilities to communicate their own views via visual, audio and tactile means. Data were analysed in relation to the Articles of the Convention on the Rights of Persons with Disabilities, identifying a wide range of priority areas including recreation, leisure and cultural life; employment; home and family life; and education. It is proposed that policy and programme responses must take a holistic view of children and their needs, affirming but thinking beyond the importance of education, to address the complexity of the systemic disadvantage faced by children with disability.     

What rights for disabled children? Home enteral tube feeding in the community

The growing number of disabled children who are tube fed at home has important implications both for families and the professionals who support them. This paper reports on the preliminary findings of a project which aims to assess the practical, social and emotional impact of home enteral tube feeding (HETF) on the lives of disabled children and their families. The evidence presented here suggests that guidance and training on HETF for non-parent carers is both inadequate and inconsistent. Consequently access to education and social services may be restricted or even denied for disabled children on HETF as a direct result of their perceived need for nursing or medical care. Copyright © 1999 John Wiley & Sons, Ltd.     

Punishing Children for Caring: The Hidden Cost of Young Carers

SUMMARY. This paper examines the lives, experiences and needs of children who care - those children under the age of 18 who provide primary care for a sick, disabled or elderly adult in the home. It presents data from a recent study into the lives of these children, their responsibilities, their commitments, their pain and their fears. It paints a picture of neglect both by professionals paid to care as well as by other family members. It suggests that child carers are effectively punished for caring. The paper goes on to examine the implications for child carers of the Community Care Act, finally implemented on 1 April 1993, to raise a number of critical questions about the rights of children who care, and to suggest a number of innovative ways forward, based upon the expressed needs of young carers.     

Drug-endangered children need a collaborative community response

The United States is facing an epidemic of the use of methamphetamine drugs. Child welfare has not yet addressed the needs of the children living in so-called "meth homes." These children are endangered not only from the chemicals involved, but also from parental abuse and neglect. Communities are recognizing the need for interagency collaboration to address the consequences of this epidemic. Spokane, Washington, has created a Drug-Endangered Children Project, whose mission is to implement a collaborative response among law enforcement, prosecutorial, medical, and social service professionals to the needs of drug-endangered children. This article presents the findings from the evaluation of the first year of the project, including a baseline assessment of the needs of drug-endangered children and the extent of community-based collaboration achieved. This article makes recommendations for future community-based partnerships to improve the well-being of drug-endangered children.     

The development of a systematic approach to mental health screening in Child Advocacy Centers

We report on efforts to implement a new protocol of mental health screening for children seen in Child Advocacy Centers (CACs), including the results from the first year of implementation with 1685 families. The parent-reported child screening results (obtained on 46.3% of children) indicate that while many children were not experiencing significant symptoms of internalizing or externalizing problems, a subset of children had very elevated scores. At the one-week and one-month screening, consistent predictors of more severe internalizing problems included age, a parent or step-parent as the offender, and having been removed from the home. For externalizing problems, consistent predictors included Caucasian ethnicity and having been removed from the home. By the one-week follow-up, about half of those interviewed (50.8%) had entered counseling or had an appointment pending. The likelihood of initiating mental health services was increased when the alleged abuse type was sexual, when the child had been removed from the home, and when the child's internalizing and externalizing symptoms were more severe. Surveys of the CAC staff implementing the new process suggest that it helped them understand the needs of the children, though their ability to reach some families was a barrier to implementation.     

Special-needs adoption

In the last 15 years there has been a change in adoption patterns toward the adoption of children with special needs. A major problem with this type of adoption is the disruption rate. The purpose of this study is to provide multivariate analysis on the characteristics of families and the characteristics of children that can be utilized to predict successful adoptions of these children.Data were collected from a private, nonprofit agency in a large southwestern city that specializes in special-needs adoption by analysis of home study reports, supervision reports, and information accompanying a child for families that have adoption finalized or disrupted by this agency (N = 91).Several factors were found to influence adoption outcome, including age of the child, presence of other children in the home, placement number, age of the woman, family income, and type of placement. The reasons for these findings and their implications are briefly discussed.