Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families' experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization. Instead, parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards.     

After the Intensive Care Nursery Experience: Families' Perceptions of Their Well Being

This article describes family well being after a child's intensive care nursery experience. Thirty families of children who were graduates of intensive care nurseries participated in the study. Fifteen families of children with identifiable disabilities and 15 families of children with no identifiable disabilities were interviewed and completed standardized questionnaires. A comparison of family well being was done across three dimensions: the child's characteristics and caregiving needs, the family's support resources and needs, and the family's values and beliefs regarding their child's hospitalization and resulting special needs. Both groups of families had realized a renewed sense of meaning concerning family, children, and life itself due to their child's medical crises or disability. Families of children with disabilities, however, noted their financial concerns, burdens with their child's caregiving, and their difficulty in locating services for their child. These families' experiences underscore the need for a coordinated transition from the hospital to the community for the family and child.     

The Concurrent and Longitudinal Effects of Child Disability Types and Health on Family Experiences

This study examines the concurrent and longitudinal effects of children’s disability types and health on family experiences, namely, parent divorce, mother’s unemployment, and receipt of social welfare. The parent and school staff survey data for 1999 and 2004 from the Special Education Elementary Longitudinal Study were analyzed, when the ages of children with disabilities ranged from 6 to 17. Weighted logistic regressions using Taylor Series Linearization were used to model the concurrent associations and longitudinal association between children’s disability types and health and family experiences. Models were adjusted to account for other children in the family with disabilities, sociodemographic characteristics, and other family experiences variables. Family experiences varied significantly by disability type in 1999. Compared with families of children with learning disabilities, parents of children with emotional disturbances were 81% more likely to get divorced, and 2.5 times more likely to receive welfare from 1999 to 2004. Mothers of children with a secondary disability were 81% more likely to be unemployed than those of children without a secondary disability. These findings indicate that specific disability types in children have an influence on family experience, and that some of those influences may persist over time. Families of children with emotional disturbances appear to be particularly at risk for negative family experiences. Clinicians, educators, and policymakers should be aware of the complex needs of families of children with disabilities when considering the types of services and supports provided to both children with disabilities and their families.     

Issues in serving culturally diverse families of young children with disabilities

Programs to assist families with young children with disabilities must demonstrate a clear commitment to providing services equally to all families who need them. Therefore, cultural awareness and sensitivity must be built into all phases and levels of these programs. This paper directs administrators to some of the cultural issues which may arise surrounding early intervention efforts for young children with disabilities and their families. It is hoped that the narrative will stimulate creative thinking and dialogue about how best to serve families with young children with disabilities in culturally relevant and, thus, appropriate and effective ways.     

Adopting Children with Developmental Disabilities: A Long‐Term Perspective*

Long‐term maternal adjustment to the adoption of children with developmental disabilities was studied in a sample of 123 adoptive families using multiple measures of adjustment including depression, marital satisfaction and others. Conclusions were that adjustment was generally positive over an approximately 11‐year period, regardless of family demographic or child characteristics. Moreover, adjustment to subsequently‐adopted children was comparable to adjustment to earlier adopted children. These results suggest that adoption policy and practice should promote the adoption of children with developmental disabilities, and be flexible with regard to family and child characteristics, including placing multiple children with disabilities in the same home.     

A Night Without Stars (Book)

Children with disabilities need adequate nutritional intake to survive and thrive. Many are at risk and in need of nutritional intervention. In this study we evaluated the outcomes of nutrition services for children with disabilities and their families using an integrated model of feeding and nutrition. Thirty-five children and families who received nutrition intervention services participated in the study. Children with disabilities and inadequate nutrition significantly benefited from nutrition interven- tion services. Children increased in weight-for-height ratios. Families reported in- creased alertness for their children with improved nutritional status. Families of children with greater feeding difficulties experienced increased stress and decreased social support. These findings can help families and professionals work in partnership to meet the nutrition needs of children with disabilities and chronic health care problems before a child becomes severely malnourished or a family becomes dys- functional.     

Helping Families Meet the Nutritional Needs of Children With Disabilities: An Integrated Model

Children with disabilities need adequate nutritional intake to survive and thrive. Many are at risk and in need of nutritional intervention. In this study we evaluated the outcomes of nutrition services for children with disabilities and their families using an integrated model of feeding and nutrition. Thirty-five children and families who received nutrition intervention services participated in the study. Children with disabilities and inadequate nutrition significantly benefited from nutrition interven- tion services. Children increased in weight-for-height ratios. Families reported in- creased alertness for their children with improved nutritional status. Families of children with greater feeding difficulties experienced increased stress and decreased social support. These findings can help families and professionals work in partnership to meet the nutrition needs of children with disabilities and chronic health care problems before a child becomes severely malnourished or a family becomes dys- functional.     

An Annotated Bibliography on Respite Care for Children and Families

With an increasing emphasis on home care more and more children with severe disabilities and chronic-acute health impairments will be cared for at home. Care of these children places great financial physical, and emotional strains on families. Adequate support for families is essential to prevent costly rehospitalization foster placement or worse. Respite care is a supportive service that is an important part of every effective plan for home care. This bibliography offers annotations on a range of materials directly addressing or closely related to the topic of respite care for children and families. The bibliography will be useful for the reader searching for general material on the topic as well as the reader interested in specific aspects of respite care, including family perceptions, program models, funding issues, and books, and some government materials are provided. Additionally, a listing of training materials, and where they can be obtained is provided without annotations after the bibliography.     

Family caregiver costs of chronically ill and handicapped children: method and literature review

Studies to date on the costs to family caregivers of children with chronic diseases and disabilities were surveyed. The survey was conducted in the context of an economic framework, which set cost categories and definitions as well as causal factors influencing costs. Emphasis was placed on variations in costs, and in particular on identifying those categories of families whose cost burdens are high. The analysis indicated a high cost burden for families in all disease categories studied, although a lack of uniformity in data presentation and in the variables studied prevented specific generalizations to be made about the numbers or characteristics of families with high costs. Suggestions are made for increasing the uniformity of data in future studies.     

Perceived benefits experienced in support groups for Chinese families of children with disabilities

Parent support groups have been considered an important channel for families of children with disabilities who seek support and resources. Given the view of family privacy in many diverse cultures, it is unknown whether or not parents from diverse backgrounds can receive the same benefits as parents from the dominant culture. The purpose of this qualitative study was to examine what influenced 15 Chinese parents of children with disabilities in their decisions to participate in support groups and to investigate their perceive benefits of being in support groups. Results suggested that Chinese parents wanted to meet and share knowledge with other Chinese families of children with disabilities due to cultural and language challenges they experienced. Their support group participation led them to develop a sense of belonging and to feel confident and empowered when handling issues regarding their children with disabilities. Implications for future research are discussed.     

Father Involvement and Early Intervention: Effects of Empowerment and Father Role Identity

The family‐centered service delivery model used in early intervention is meant to empower families of children with disabilities. The present analysis examined the effects of empowerment and father identity on father involvement with children with disabilities. Father involvement was measured using three indices: attachment (i.e., feeling a strong connection to the child), engagement (i.e., participating in activities with the child), and responsibility (i.e., meeting the child's needs). Father empowerment and father identity, measured as salience, satisfaction, and reflected appraisals, consistently predicted higher levels of father involvement in hierarchical regression models. In addition, mediation analyses revealed that father identity partially mediated the relationship between empowerment and father involvement. These findings support the family‐centered service delivery model and suggest that it may be able to improve the lives of children with disabilities by enhancing father role identity and subsequent fathering activities.     

Sexual Lives and Family Function of Women with Family Member with Disability: Educational Status and Income Level

This study was conducted to determine how sexual lives and family functions of women with low educational and income status who had family members with disability were influenced. The study included subjects with disability comprising 12.29% of Turkish population who have disabilities. Using the sampling formula in which the size of universe was known, the sample included the families with 183 children with disability and women. Study was conducted in the center of the province Kayseri with children with disability in families with low socio–economic status, attending a school and with the families living in a neighborhood with low socio–economic status. Low income level determined unhealthiness and 56.8% of the participants reported to have problems in sexual relation. Sexual lives and family functions of women with low educational status and income level were determined to be negatively more affected because of an additional problem; having a member with disability in the family.     

Family-centred care in early intervention: A systematic review of the processes and outcomes of family-centred care and impacting factors

Family-centred care (FCC) has been established as a best practice model for child disability services internationally. However, further empirical support is required to explore the operationalization and efficacy of FCC, in the absence of a universal practice model. This review aimed to identify the key processes and outcomes of FCC in early intervention (EI) settings and the factors that impact FCC. A systemic review was conducted exploring the processes and outcomes of FCC delivered to children predominantly aged 0–6 years with disabilities/suspected disabilities and families as part of EI or early services. The search procedure was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Moher et al., 2009). Narrative analysis of data was guided by Braun and Clarke (2006, 2014). Data were presented as per the standards for reporting qualitative research (SRQR; O'Brien et al., 2014). Forty-two studies were included. The majority (90.5%) outlined the processes of FCC, with 59.5% of studies detailing outcomes. Processes were largely reported as qualitative data and/or subscales of the Measure of Processes of Care (MPOC; King et al., 1995), which were subsequently collated. Findings indicated eight key operational processes and corresponding outcomes. Variables that hinder or facilitate FCC included family/professional characteristics, family/service resources, and parent attitudes, engagement and agency. FCC was largely conceptualized as the application of services to children and their families. Critical perspectives on FCC are discussed. It is hoped this research will contribute to the development of a framework of FCC in EI to inform services provided to young children with complex needs and their families and future research.     

Children enabling change: A multicultural, participatory, community-based rehabilitation research project involving chinese children with disabilities and their families

A participatory, action-oriented research approach was used in developing community-based services for children with disabilities in an urban Chinese community. A review of the literature and discussions with community members revealed that Chinese families who have a child with a disability experience the double barrier of disability and culture. An action research paradigm was developed that would both identify existing barriers for families and provide opportunities for overcoming these obstacles through the research process. A total of 94 persons in the Chinese community were interviewed, including family members caring for a child with a disability and community members with no direct contact with a person with a disability. Results from the interviews revealed negative attitudes towards children with a disability grounded in cultural beliefs regarding a child’s capacity to contribute to the family, a widespread use of traditional healers in conjunction with a family doctor or hospital, and a lack of knowledge on available community support agencies. The findings of the research are discussed with the aim of building on community strengths to reinforce existing family support programs and involve families and children with a disability in such processes in a culturally appropriate manner.     

The family physician's role with parents of young children with developmental disabilities.

Technological advances, coupled with recent federal legislation targeting young children who have developmental disabilities, will increasingly necessitate an expanded role of the family physician in the lives of these children and their families. Of particular importance is Public Law 99-457, the Education of the Handicapped Act Amendments of 1986, which recognizes the importance of the family unit in any intervention methodology that may be provided. This legislation also notes that the active involvement of the family's physician is desirable when designing services appropriate for children with developmental disabilities and their families. Providing support and optimizing positive family interactions are crucial to these children. Recommendations to enable the family physician to address more effectively the unique needs of this patient population include (1) an informal screening protocol, and (2) communication skills that include talking with both parents at the same time, using accurate, nonstigmatizing language when presenting a diagnosis, showing acceptance of and optimism regarding the child, encouraging parents to explain their child's problems to others, helping parents to learn about their children's unique needs, and helping parents to understand how their attitudes affect their child.     

家庭健康：概念、测度与中国现状

本研究对家庭健康的框架和维度进行了介绍;基于中国版家庭健康简易评价量表,评价我国家庭健康的分布以及不同家庭特征下的异质性;并通过分析家庭健康对个体健康相关生命质量的影响论证家庭健康的重要性。我国家庭健康均分为37.99分（总分50）;家庭健康存在显著的城乡差异;家庭经济水平越高,家庭健康水平越高;核心/主干/联合家庭的家庭健康水平高于其他家庭类型;残疾人家庭健康评分低于非残疾家庭。家庭健康对于个体生命质量存在显著的正向效应。家庭健康为制定卫生政策、执行健康干预提供了一个更为全面的跨学科综合指标,在健康中国建设中应予以充分关注。     

Adoption of children with disabilities: an exploration of the issues for adoptive families

This systematic literature review is an exploration of issues for adoptive families throughout the adoption process and into the various phases of the life of the adoptive family. Although there has been much recent research related to adoption, in general, very little adoption literature addresses the often unspoken needs of families who want to adopt or have adopted children with disabilities. These families report lack of good preparation services, post-adoption support, disability specific support, educational support and assistance with managing open adoptions. Children with significant emotional, physical, sensory or mental impairments represent an increased proportion of the population of children who have been adopted. This review of literature related to adoption and disability raises awareness of those involved in adoption processes and in education, of the needs of adoptive parents, which, in turn, will impact on the well-being of families, and waiting and adopted children with disabilities.     

Family history of immigration from a tuberculosis endemic country and low family income are associated with a higher BCG vaccination coverage in Ile-de-France region,France

After withdrawal of multipuncture BCG device from the French market in January 2006, vaccination coverage (VC) with the intradermal device has dropped and since remained sub-optimal in Ile-de-France, the only region of mainland France where BCG is recommended to all children. We conducted a cross-sectional study to identify socio-economic factors associated with BCG VC in children of Paris metropolitan area born after January 2006. Two-stage random sampling was used to include 425 children up to 5 years old from Paris and its suburbs. Information was collected through face-to-face interviews and vaccination status confirmed by a vaccination document. Poisson regression analyzed the association between VC and potential determinants. VC of children from families with the lowest incomes (first quartile of family income/consumption unit (CU) (<883 €) was close to 100% regardless of family origin. In families with higher incomes (≥883 €/CU), VC was significantly higher among children born to families from a tuberculosis highly endemic country (98.2%) compared with other children (76.2%) (p = 0.004). Children of low socio-economic background as well as those with a family history of immigration, regardless of family income, are correctly identified as being at high risk of tuberculosis and properly vaccinated with BCG in this area.     

Time away from “smelling the roses”: Where do mothers raising children with disabilities find the time to work?

Using the Australian Time Use survey (TUS), this study examined time allocation among working parents raising children with disabilities. Findings showed that raising children with disabilities reduced the time working mothers had for leisure activities, but increased the time for socializing activities. Consistent with the literature, the latter effect probably reflects the special need of working mothers raising children with disabilities for strong social networks offering regular support. While a mother's time for personal care was reduced by a child with a disability, a father's time for personal care was unaffected. Thus, mothers were relatively more disadvantaged than fathers in terms of total time for themselves. This study offers new knowledge on the impact of childhood disability on working parents' time for personal care and leisure, activities that can improve their psychological and physical well-being.