Experiences with home hospice care: determinants of place of death

During the past few years the United States has witnessed the growth of hospice care as an alternative approach for the care of the terminally ill. This paper examines a sample of patients who elected to enroll in a home hospice program. Approximately 57 percent of these patients remained at home until death. The other 43 percent chose to return to a facility where they eventually died. Evidence indicates that patients and caregivers who have more difficulty with terminal care at home are more likely to return to a facility. The analysis explores factors that explain why some patients and caregivers have a more troublesome experience with terminal care at home. Four of the factors tested are found to be related to place of death: (1) the number of visits from hospice nurses, (2) the intensity of contact with the hospice nurses, (3) length of time patients are enrolled in the hospice program, and (4) race of the patient. The implications of these findings are discussed and recommendations for delivery of hospice services are suggested.     

Hospice program integration: an issue for policymakers

As the number of hospice programs in the United States expands, policymakers face a variety of issues concerning the care of the terminally ill. Do hospice programs offer a truly unique approach in caring for the dying? Are hospice services cost effective? Should hospice programs become integrated into the mainstream of medical care service delivery? Based on data from hospice programs in an industrialized Midwestern state, this paper explores the strategies employed by hospice programs to become integrated, the conflicts that have arisen among providers of hospice care, and the impact of hospice program integration on patient care. Results show that as hospice programs become more integrated, they have lost some of the idealism on which they were founded, have altered organizational structures, and have changed certain patient services. However, there is no evidence to suggest that integration of hospice programs into the medical mainstream has decreased the quality of patient care or patient satisfaction for hospice services.     

Rights,expertise and negotiations in care and education

More young children and their families have access to early years services than ever before in Britain. Within these settings practitioners and parents need to work closely together for the benefit of the child. Yet the relationships within the childcare and education triangle (child, parent, practitioner) are highly complex and sometimes fraught with tension. Drawing on theories of care, the paper offers a structure for decisions about childcare and how a combination of expectations from parents and practitioners regarding everyday care practice can either be the basis of a trusting relationship between the adults involved in this caring triangle or a breeding‐ground for tensions. The study is mainly based on qualitative research from a study combining qualitative and quantitative methods with family day care providers in the north‐east of England and the north‐east of Germany.     

The effects of out-of-home care on the development of social competence in Sweden: A longitudinal study

In this study, 140 Swedish preschoolers and their parents were first contacted, observed, and interviewed when the children averaged 16 months of age. Subsequently, 53 children entered day-care centers, and 33 were enrolled in family day-care facilities. Further assessments of the children, their families, and their care facilities took place 3, 12, and 24 months after the initial assessment. As predicted, type of child care had no apparent impact on the children's sociability or personality maturity, as measured 24 months after the study began. However, the quality of care received both at home and in the out-of-home care facilities, reported family social support, and child gender helped predict personality maturity (as reported by the mothers using the Block CCQ) and observed social skills with familiar peers and unfamiliar adults.     

Differential Treatment of Siblings: Interview and Diary Analyses Comparing Two Family Contexts

We assessed parental differential treatment of siblings (maternal time, affection, discipline) in normal and high-risk families. Differential treatment was measured using home interviews, nightly phone ratings, and daily diaries tracking how mothers spent their time. Subjects were 40 mothers of toddlers (average age 2 years) and preschoolers (average age 4 1/2 years): half were caring for a younger child with a chronic illness (i.e., cystic fibrosis), and half were caring for two healthy children. Little evidence of parental differential treatment was found in the home or phone interview data. However, on the diary variables, both quantitative and qualitative differences in parental treatment were found in cystic fibrosis (CF) versus comparison families. Specifically, mothers spent more individual time with younger, chronically ill children in play and mealtime activities than with their older, healthy siblings. Further, mothers in the CF group rated time spent with older children as significantly more negative than time spent with younger children. Convergence between measures of differential treatment and advantages of using a high-risk comparison approach are discussed.     

Work-based antipoverty programs for parents can enhance the school performance and social behavior of children

We assess the impact of the New Hope Project, an antipoverty program tested in a random assignment experimental design, on family functioning and developmental outcomes for preschool- and school-aged children (N = 913). New Hope offered wage supplements sufficient to raise family income above the poverty threshold and subsidies for child care and health insurance to adults who worked full-time. New Hope had strong positive effects on boys' academic achievement, classroom behavior skills, positive social behavior, and problem behaviors, as reported by teachers, and on boys' own expectations for advanced education and occupational aspirations. There were not corresponding program effects for girls. The child outcomes may have resulted from a combination of the following: Children in New Hope families spent more time in formal child care programs and other structured activities away from home than did children in control families. New Hope parents were employed more, had more material resources, reported more social support, and expressed less stress and more optimism about achieving their goals than did parents in the control sample. The results suggest that an anti-poverty program that provides support for combining work and family responsibilities can have beneficial effects on the development of school-age children.     

Impediments to communication in transition to terminal illness

Viewing themselves in two hypothetical roles-as terminal patients and as family members related to a terminal patient-48 adults were surveyed on their expectations and preferences about how information should be communicated when a terminal illness is first diagnosed. Identifying with the patient role, respondents believed patients should be told the truth immediately and unconditionally. In contrast, respondents indentifying with family members perceived conditions under which the rights of patients should be abridged. In this latter role, male respondents were significantly less likely than males to imagine themselves as able to inform a loved one about a terminal illness. Nevertheless, for both sexes, early childhood experiences communicating about death and dying were found to be a better predictor of the case with which respondents can imagine communicating with a terminally ill loved one than are current adult attitudes and experiences. Regardless of personal ease in discussing death, however, most respondents thought the physician, not family members or other health care professionals, should decide when and how the terminally ill adult should be informed--a noteworthy finding in light of the fact that 83 percent of all respondents consider physicians poorly equipped for this role.     

International,high‐ability adventures: An interview with miraca gross

Research into child and youth suicide concludes that more data are needed from families directly involved in the tragedy. This article presents the insights of eight bereaved families, each of whom experienced the suicide of an adolescent son. Suicidal behavior of friends, death of a family member, personal crises and internalized anxieties were significant factors for the predominantly honor student victims. Implications are included for educational and medical professionals.     

性别与超越:对儿童家庭照顾责任的性别效应研究

儿童家庭照顾责任具有高度性别分工与私人领域化的特征,在"照顾责任家庭化"的整体格局中,女性往往承担更多的照顾责任,即呈现"照顾责任女性化"的现象。本文以"重生行动"唇腭裂患儿照顾者为例,从依附理论、性别角色理论、关怀伦理理论等社会性别理论视角出发,以照顾责任期待归属的性别差异、照顾内容的性别差异、照顾压力的性别差异三个维度探讨"照顾责任"的性别效应,提出合理分配家庭照顾责任,构建家庭照顾网络;摈弃照顾女性化标签,检视"照顾责任女性化"在学术谱系中的阐释方式;重视女性照顾工作社会价值的价值,推动照顾政策的变革与完善;社会工作者秉持优势视角,建立女性家庭照顾的社会支持系统等反思性建议。     

失独家庭精神关爱问题研究

失独家庭,指的是独生子女发生意外伤残、死亡,其父母不再生育和收养子女的家庭。近年来,失独问题逐渐成为社会关注的一个焦点。失独群体除了要承受丧失儿女的孤苦,更要担心疾病和养老困难等一系列现实难题。通过以往的研究了解到,失独家庭的困难简单地从物质层面帮助是远远不够的。失独家庭对精神关怀、精神关爱的需求表现更为强烈。因此说,做好失独家庭的精神关爱工作和提高失独老人精神文化生活质量,是目前做好失独家庭帮扶工作的重点。基于此,选择失独家庭的精神关爱作为研究对象,并在认真了解失独家庭面临的困难现状后,分析和探究给予失独家庭精神关爱的方法和途径。     

Providing High-Quality Support Services to Home-Based Child Care: A Conceptual Model and Literature Review

ABSTRACT

Research Findings: Home-based child care accounts for a significant proportion of nonparental child care arrangements for young children in the United States. Yet the early care and education field lacks clear models or pathways for how to improve quality in these settings. The conceptual model presented here articulates the components of high-quality support to child care providers; related factors; and hypothesized provider, family, and child outcomes. The model is based on a literature review of research on home-based child care, home visiting, early childhood mental health consultation, coaching, and family services. We hypothesize that high-quality support to home-based child care that offers relationship-based services focused on quality caregiving (individual home visiting and group supports such as training and networking) and sustainability (materials, equipment, referrals) is most likely to positively impact quality caregiving for children and families. Practice or Policy: Current federal efforts and policy initiatives to increase the supply and quality of infant–toddler child care focus on the development of systems that support home-based providers. The conceptual model of high-quality support described here will inform future program development and research on how to improve quality in home-based child care for the millions of low-income children in these settings.     

Medical neglect of a child: challenges for pediatricians in developing countries

OBJECTIVE: To conceptualize the underlying causes of the medical neglect of children in a developing country and to provide suggestions for the management of neglect by pediatricians. METHODS: A case history of a 4-year-old boy from Turkey with neglect of the required treatment for acute lymphoblastic leukemia is used to examine the causes and management of medical neglect. Results: Although epidemiological studies on child neglect are lacking, this case exemplifies how in DEVELOPING countries, reasons for neglect or non-compliance with medical recommendations and the roles and actions taken by the health care and the social service systems may differ from western populations. Common to both western and developing countries, the characteristics of the child, family, and society may be reasons for medical neglect. However, cultural fatalistic beliefs profoundly present in the developing world may also contribute to the medical neglect of a child. Identification of the neglect, a comprehensive, multidisciplinary assessment emphasizing the strengths within the family and the society, and the determination of the pediatric team to act in the best interest of the child may result in resolution of the neglect even in circumstances where resources within systems are not sufficient. CONCLUSIONS: In developing countries, increased emphasis on child neglect, its prompt recognition and management within the pediatric profession as well as at a health care and social service system levels are needed to address this prevalent and potentially fatal child health problem.     

Abused children admitted to a pediatric in-patient service in Switzerland: a ten-year experience and follow-up evaluation

In a period of 10 years (1974-1983) 82 children were admitted to our pediatric in-patient service because of child abuse or neglect. In 1984 the records of these children were examined to obtain a follow-up of 34 children who were less than 10 years of age at the time of their admission for non-accidental trauma. Thirty-eight percent of these children were less than 2 years old at the time of abuse, 30% from 2-3 years (68% less than 3 years) and 32% between 3-10 years. The lesions were as described in the literature. There was a greater proportion of children of foreign origin than would be expected from the general population of Geneva. At the time of hospital admission the majority of the parents were legally married and the majority of the children were cared for at home by a parent or relative. The perpetrator in most situations remained unknown; universal denial was the rule and therapeutic treatment of the family difficult to establish. The general policy of the protective services in Geneva is to maintain the abused child with his biological family. Over time, however, there is a tendency for abused children to be either removed from their homes and placed in foster care or to receive stricter supervision within their families. A large proportion of the study children were experiencing school difficulties and attended special classes. A relatively large number had left the country, either with or without their parents. Risk factors recorded in the literature were identified.     

Family and individual predictors of child care use by low-income families in different policy contexts

We examine family and individual characteristics that predict low-income parents’ child care use, problems with child care, and receipt of public subsidies using data from three demonstration studies testing policies to promote employment for low-income parents (primarily single mothers). The characteristics that mattered most, particularly for use of center-based care were family structure (ages and number of children), parents’ education, and personal beliefs about family and work. The effects of race and ethnicity were inconsistent suggesting that generalizations about ethnic differences in child care preferences should be viewed with caution. There was little support for the proposition that many low-income parents do not need child care assistance because they use relative care. Child care subsidies and other policies designed to reduce the cost of care and to increase parents’ employment appeared to meet the needs associated with caring for very young children and for large families and were most effective in reaching parents with relatively less consistent prior employment experience. Parents whose education and personal beliefs were consistent with a preference for center-based care were most likely to take advantage of the opportunity to choose that option and to use subsidies.     

Neglect contributing to tertiary hospitalization in childhood asthma

Clinical experience demonstrates that many chronically ill children have an unstable course of illness ending in tertiary care, not because of extraordinary disease, but because they come from dysfunctional and neglectful households. Families frequently cannot or will not adapt to the demands of their chronically ill child. This study substantiates the extent to which neglect and family dysfunction have contributed to the need for hospitalization of asthmatic children at National Jewish. Neglect accelerates the cycle of morbidity and stress associated with illness. Using a measure of global functioning, we demonstrate a psychologic morbidity associated with medical neglect. We discuss children at imminent risk in their home environment and the process of seeking alternative placements. We acknowledge gaps in delivery of health care to this difficult, treatment-resistant population and encourage development of day treatment and home outreach programs.     

Workshops in caring: a first module

Workshops in Caring were designed to expose attitudes, biases, and concerns of a nursing home staff toward aging, illness, and death. This paper touches on techniques and materials (more literary and humanistic than clinical) for encouraging participants to focus on and share their feelings. What inhibits or facilitates a caring relationship between elderly, often terminally ill, residents and staff members was the prime focus of both sessions: "Will You Still Need Me, Will You Still Feed Me?" and "Who Owns One's Life?"     

Der Abbau von Bildungsbenachteiligung durch Kindertagesbetreuung für unter 3-Jährige – zwischen Wunsch und Wirklichkeit

Based on the assumption that children can benefit from early childhood education, the present paper investigates if the admission to day care and the selection of the type of day care (child care centers and home day care) is socially selective. In doing so, the paper analyzes how the socioeconomic and immigrant background of families influences which type of day care is used. For children under the age of three, the social background of families does influence if a child receives day care, but this influences diminishes the older the children get. The type of day care (child care centers and home day care) did not differ according to social background. The paper closes with a discussion of the challenges and potentials for development of educating children under the age of three.