Effectiveness of Texas Children's Hospital's Saturday Wellness Program for Children with special health care needs

Children with Special Health Care Needs comprise approximately 13% of children within the state of Texas. In addition to their primary diagnosis, it is estimated that approximately 18% of these children with special health care needs are overweight. Many times parents of children with special health care needs are extremely busy dealing with the daily responsibilities required to care for a child with a chronic illness, and thus, lose connections with their local communities and available resources for health needs such as obesity. Texas Children’s Hospital’s Wellness Program for Children with Special Health Care Needs is a family-centered wellness program to prevent obesity in this population; however, no formal evaluation of the program has been conducted. The purpose of this study was to assess the effectiveness of the Texas Children’s Saturday Wellness Program on weight status, nutrition knowledge, and the frequency of physical activity of children who participated in the program. A secondary data analysis was conducted with 50 children with special health care needs and their families who participated in the program during 2007 and 2008. A pre post-test study design was used with data collected immediately before and after participation in the 4 week program. Data measures included demographics (age, race, etc.), anthropometrics (height and weight), a quality of life survey focusing on nutrition and physical activity behaviors, and a knowledge survey on physical activity and nutrition. Of 50 participants, 33 (66%) completed the program. Children participating in the program showed a significant decrease in BMI (mean=29.83 to mean=29.22, BMI z score p<0.01), as well as frequency of physical activity (p<0.05) and knowledge (p<0.01). Texas Children’s Hospital’s wellness program for children with special health care needs provided a promising structure for a wellness program within a multi-ethnic special needs population; however, long term effect research is needed with a larger sample size and more comprehensive outcomes and process measures. Nonetheless, this program indicates the effectiveness and feasibility of a family-based approach to weight loss in children with special needs.^

MEETING THE NEEDS OF HANDICAPPED CHILDREN: A STUDY OF EDUCATIONAL AND HEALTH CARE SERVICES PROVIDED TO PRE-KINDERGARTEN CHILDREN IN THE HOUSTON INDEPENDENT SCHOOL DISTRICT EARLY CHILDHOOD PROGRAM FOR THE HANDICAPPED (PARENT SATISFACTION, FUNCTIONAL STATUS, PSYCHOSOCIAL DEVELOPMENT)

The Education for All Handicapped Children Act of 1975, P.L. 94-142, created a new challenge for the nation's public school systems. During 1982-1983, a national study, called the "Collaborative Study of Children with Special Needs", was conducted in 5 metropolitan school districts to evaluate the effectiveness of education and health care services of children in kindergarten to 6th grade being provided under P.L. 94-142 programs. This dissertation (the Substudy) was undertaken to augment the findings of the Collaborative Study. The purpose of this study was to develop a database to provide descriptive information on the demographic, service and health characteristics of a small group of 3 and 4 year old handicapped children served by the Houston Independent School District (HISD) during 1982-1983.^ The study involved a stratified sample of 105 three and four year old children divided into 3 groups according to type of handicapping condition.^ The results of the study gave a clearer picture of the demographic characteristics of these Pre-K children. Specifically, sex ratio was approximately one, lower than the national norm. Family and socioeconomic characteristics were assessed.^ The study used an independence/dependence index composed of 11 items on the parent questionnaire to assess the level of functional independence of each child. An association was found between index scores and parent-reported effects of the child on family activity. Parents who said that their child's condition had affected the family's job situation, housing accomodations, vacation plans, marriage, choice of friends and social activities were also more likely to report less independence in the child. In addition, many of the Substudy children had extensive care-taking needs reflected in specific components of the index such as dressing, feeding, toileting or moving about the house.^ In general the results of the Pre-K Substudy indicate that at the early childhood level, the HISD special education program is functioning well in most areas and that parents are very satisfied with the program. (Abstract shortened with permission of author.)^

DISEASE-RELATED INFORMATION NEEDS OF CANCER PATIENTS AGES 11-20: A COMPARISON OF PATIENT-PARENT AND PATIENT-PHYSICIAN PERCEPTIONS

Innovative, aggressive treatments and prolonged survival rates for patients with childhood cancers have placed new demands on the patient, parent and physician. As a result, counterproductive coping behaviors are often noted in adolescent cancer patients.^ One of the main ways the environment is manipulated by the individual to achieve personal comfort is through selectivity of information. An individual will usually pull the support personally needed to cope from the environment if sufficient resources are available. However, information provided young cancer patients is often filtered through the physicians and parents perspectives of the patient's needs without systematic input from the patient. In order to ensure that adequate information resources are available to help teenage patients cope with their illness, health professionals must have insights into the information needs of those patients. No previous efforts to address this subject were found in the literature.^ This study was designed to identify adolescent perspectives of their disease-related information needs and to compare their viewpoints with those of their parents and physicians. Sixty-five outpatient cancer patients (ages 11-20) receiving treatment at the University of Texas M. D. Anderson Hospital and Tumor Institute in Houston, Texas, 60 of their parents, and 53 physicians, who were involved in the treatment of pediatric patients at M. D. Anderson, were asked to complete self-administered questionnaires. The questionnaires used were developed, administered and analyzed by the investigator. Specific areas addressed in the questionnaires included: Perceptions of cancer-related tests and treatments, the importance of 30 disease-related items of information, responses evoked by receipt of information, current and preferred sources of information, delivery of information at the time of diagnosis, and disease-related information requested for patients, family, friends and teachers.^ Adolescent perceptions of their information needs and their preferences for delivery of information were determined. The relationships between patient-parent and patient-physician perceptions were then analyzed to determine areas in which agreements and disparities in viewpoint existed. Programmatic and research recommendations were then provided.^ Hopefully, through these efforts, the adolescent patient will be helped to receive relevant information support from those deemed to be most important to his/her efforts to cope with cancer. ^

Study of rural leadership and implications for community participation and development in the health and family planning programs in Bangladesh

The vast majority of Bangladesh are poor and are unable even to provide for the most basic human needs. These are the landless and marginal farmers of Bangladesh. They constitute 70% of the rural population, which in turn constitute about 90% of the country's population.^ Effective development of Bangladesh would largely mean the development of the landless and marginal farmers. Past efforts of development in this section of the population, including that of the government, have not succeeded. One of the development goals of the government of Bangladesh is to improve the quality of life of the rural population through health and population control measures. Overpopulation, malnutrition and diarrhea are the major impediments to socioeconomic development in Bangladesh.^ The current study was designed to identify whether there is effective opinion leadership among the marginal and landless peasants affecting decisions on acceptance or nonacceptance of family planning methods and oral rehydration therapy (ORT) in the selected rural areas of Bangladesh. The study was conducted in eight randomly selected villages with funding from the Ministry of Health and Family Planning, government of Bangladesh. One hundred twenty-five opinion leaders were interviewed after they were identified by 408 rural couples owning land less than 2 acres and wives' age below 50. The study was conducted in two phases; couples' interview preceded that of the leaders.^ Findings of the study reveal that the opinion leaders influencing adoption of health and family planning among the landless and marginal farmers belong to the same class. Theses opinion leaders own land much less than the rich farmers and the formal leaders in the rural areas. Majority of these of opinion leaders are friends, neighbors and relatives, some are other persons who are businessmen and professionals like doctors, while the rest few are the field workers of health and family planning. Source of influence as a factor contribute most in differentiating use and non-use of family planning and ORT among both couples and leaders. The most frequent sources of influence referred by the couples and the leaders are the field workers of health and family planning, followed by the peer opinion leaders (friends, neighbors, relatives) and spouse.^ The opinion leaders do not differ much from the poor couples on land holding, a strong indicator of economic status, they however differ considerably on social factors such as family planning practice, education, and exposure to mass media.^ The study suggests that future development efforts in Bangladesh have to ensure community participation by the landless and marginal farmers and opinion leaders belonging to their class. ^

Post-Permanency: An Assessment for Families’ Needs for Services and Supports

This article reports the results of a qualitative study that sought the perspectives of birth parents and adoptive parents following reunification or adoption of children from foster care. Using a participatory action design that actively involved young adults formerly in foster care and parents in the design and implementation of the study, the study focused on the consumers’ perspectives on several issues related to permanency. The article reports findings from interviews with a subset of 27 birth and adoptive families in New York City who were asked about their post-permanency experiences and from interviews with 38 child welfare professionals who were asked to respond to the parents’ perspectives. The article offers directions for child welfare practice and program development.

Highlighting the Importance of Researching Family Homelessness

This invited commentary responds to and builds upon Tobin and Murphy's article, “Addressing the Challenges of Child and Family Homelessness.” In affirming the ideas emerging from this article, Hallett and Tierney provide three points of extension: (1) more research needs to be conducted with doubled-up families; (2) the role of shame needs further exploration; and, (3) additional work needs to be done to increase access to postsecondary institutions.

The First Child In A Chinese Family Who Could Read Prior To Entry Into Elementary School: A Qualitative Intrinsic Case Study

ABSTRACT This study is an account of the literacy-related human environment a Chinese girl experienced as the first person in the history of her family who was able to read prior to entry into elementary school. Temporally speaking, the study spanned more than a decade from the initial, tentative research question to the formal, primary research question. Spatially speaking, it crossed three cultures: the Chinese, Korean, and American cultures. The study was inspired by the Zero Project in China, known as the "Project of Quality Education and Implementation for Children Aged Zero (fetus) to Six." The significance of the content issue in a child's literacy curriculum was explored in an interdisciplinary way. Case study served as a holistic research approach and provided the researcher with free temporal and spatial distance to pursue the indefinably multi-dimensional intricacies of a child's early literacy acquisition among generations in the family. Interpretation of the case was based on the relevant concepts within the scope of the researcher's knowledge of Chinese culture. Major findings revealed that the child's literacy acquisition was inseparably related to her parents' background as well as their awareness of and attitudes towards literacy, and that the foundation of all this was the harmony of the family. Through the lens of generational attitudes towards literacy and especially the lens of the researcher's multicultural life experiences, this study contributes to the field of curriculum studies in general and early literacy curriculum in particular by stimulating people to reconsider what to read to children, besides how to read to them. It calls attention once again to the classic curriculum question, "What knowledge is of most worth?" as well as what is the most essential spiritual food human beings need besides physical needs. This study suggests that Chinese philosophy should be included in a child's early literacy curriculum in China and calls for dialogues on the content issue of curriculum to gain a deeper understanding of human nature so that humans might co-live peacefully with all beings in the universe.

Using Emotion to Foster Acceptance: A Treatment Approach for Family Therapists Working with Transgender Adolescents and their Families

Currently, there is limited research and clinical focus on family therapy with transgender adolescents. When an adolescent discloses his/her transgender identity to his/her family, the family can experience an array of emotions, such as fear, distrust, anger, and sadness, along with confusion and invalidating behavior that can threaten secure attachment among family members. The purpose of this paper is to present a family therapy treatment approach for therapists working with transgender adolescents that is both culturally sensitive to the needs of these families as well as based on a systemic family therapy model. Emotionally Focused Family Therapy (EFFT) is a systemic model that is grounded in attachment theory and focuses on using emotion as a key tool in restructuring problematic relational patterns and fostering more secure family bonds. Through the use of a hypothetical case study, this paper aims at illustrating how EFFT can help family members process feelings related to the transgender identity of an adolescent family member and restore their attachment in a manner that strengthens family relationships and bonds.

Parental involvement in the vocational education of special needs youth : an evaluation and planning guide /

Cover title: Parental involvement in vocational education of special needs youth.

After adoption parent survey : analyzing the risks in special needs adoptions /

Produced in conjunction with: Delivering post adoption services : the role of the public agency, by Kenneth W. Watson.

Further E. K. Means. Is this a title? It is not. It is the name of a writer of Negro stories, who has made himself so completely the writer of Negro stories that this third book, like the first and second, needs no title.

The left hind foot.-- The f̓raid cat.-- The consolation prize.-- The first high janitor.-- Family ties.-- The ten-share horse.-- A chariot of fire.

Adult siblings' perceptions of family life and loss: A pilot case study

The death of a child with a disability presents unique challenges for individual family members. Whereas parents have received much attention in terms of their needs and challenges, siblings have received less attention. Growing up with a child with a disability who subsequently dies has a profound impact. This paper used in-depth interviews to illuminate the experiences and perceptions of siblings in one family in which a child with cerebral palsy died. The 5 siblings were interviewed about their experiences of family life and their methods of coping during the terminal phases of illness and after their sister's death. Their views on friendships, growing up, vocational choices, their sister's contribution to their lives, and their adjustment to her death are illustrated. Implications for health professionals working with siblings and families are drawn in terms of adult siblings' coping responses and their need for mutual support.

Participatory approach for the identification of dairy industry needs in the design of research, development and extension actions: Australian and Brazilian case studies

In both Australia and Brazil there are rapid changes occurring in the macroenvironment of the dairy industry. These changes are sometimes not noticed in the microenvironment of the farm, due to the labour-intensive nature of family farms, and the traditionally weak links between production and marketing. Trends in the external environment need to be discussed in a cooperative framework, to plan integrated actions for the dairy community as a whole and to demand actions from research, development and extension (R, D & E). This paper reviews the evolution of R, D & E in terms of paradigms and approaches, the present strategies used to identify dairy industry needs in Australia and Brazil, and presents a participatory strategy to design R, D & E actions for both countries. The strategy incorporates an integration of the opinions of key industry actors ( defined as members of the dairy and associated communities), especially farm suppliers ( input market), farmers, R, D & E people, milk processors and credit providers. The strategy also uses case studies with farm stays, purposive sampling, snowball interviewing techniques, semi-structured interviews, content analysis, focus group meetings, and feedback analysis, to refine the priorities for R, D & E actions in the region.

The psychoeducation needs of parents who have an adult son or daughter with a mental illness

Since deinstitutionalisation, parents of adults with mental disorders are increasingly utilised as a resource for their relatives’ care. This study used a general phenomenological perspective to capture people’s experiences. Semi-structured in-depth interviews were conducted with eight parents who were members of the Schizophrenia Fellowship of Southern Queensland to explore their perceptions of their psychoeducation needs. The themes that emerged included the usefulness of past experiences with psychoeducation, educational needs, barriers to accessing information and support, and other unmet carer needs, including the need for managing stress and emotional needs, recognition and inclusion of family members in decision-making, and negotiating the best care for their family member within the health care system. This study adds to an increasing body of knowledge that advocates for the greater inclusion and involvement of families in the care and treatment of their relatives. Further research into the needs of families, in particular barriers and supports in accessing information and services, is recommended.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.