Families and Communities: An Annotated Bibliography

Abstract: Connections between families and communities are dynamic and contextual, and their influences are reciprocal. We present a resource guide for family social scientists who are focusing on the nexus of families and communities by highlighting recent theoretical, methodological, and empirical contributions.     

Impact of Home-Based Respite Care on Families of Children With Chronic Illnesses

The recent dramatic medical and technological advances have meant that many children, who would have died previously of their chronic illnesses, now survive and live longer with their families. The purpose of this undertaking was to evaluate whether the implementation of home-based pediatric respite care reduced stress and improved the quality of life for families caring for children with chronic illnesses. Utilization of respite services was associated with a statistically significant (p < .05) reduction in somatic complaints by primary caregivers. There was also a trend in the data suggestive of an association between respite utilization and a subsequent decrease in the number of hospitalization days required by children (p < .07). Public health policy implications of the intervention are discussed.     

An Annotated Bibliography of Nutrition Resources Related to Cancer Care

No abstract available for this article.     

Summer Camps for Chronically Ill Children: A Source of Respite Care for Mothers

This study examined summer camps for children with chronic illnesses as a source of respite care for mothers. Mothers of children with asthma, cancer, epilepsy, or kidney disorders (N = 161) completed 4 structured telephone interviews (before, during, and twice after camp) measuring caregiving demands and general psychological distress. Caregiving demands were relieved during camp, returning to pre-camp levels once the child returned home. Mothers' general psychological functioning improved while children were at camp, with the maintenance of some changes lasting up to 1 month after camp. As respite care by definition provides temporary relief from caregiving demands, summer camps for children with chronic illnesses can be conceptualized as respite care providers.     

Summer Camps for Chronically Ill Children: A Source of Respite Care for Mothers

This study examined summer camps for children with chronic illnesses as a source of respite care for mothers. Mothers of children with asthma, cancer, epilepsy, or kidney disorders (N = 161) completed 4 structured telephone interviews (before, during, and twice after camp) measuring caregiving demands and general psychological distress. Caregiving demands were relieved during camp, returning to pre-camp levels once the child returned home. Mothers' general psychological functioning improved while children were at camp, with the maintenance of some changes lasting up to 1 month after camp. As respite care by definition provides temporary relief from caregiving demands, summer camps for children with chronic illnesses can be conceptualized as respite care providers.     

Preparing Families of Children With Special Health Care Needs for Disasters: An Education Intervention

Children with special health care needs pose a special challenge in post-disaster response. Current research suggests that the general population is not adequately prepared for a major disaster event, with members of vulnerable populations even less prepared. The purpose of this study was to determine the short-term effectiveness of a brief patient education intervention aimed at increasing levels of disaster preparedness among families of special health care needs children. One hundred twenty-one families were randomly assigned to either intervention or intervention plus incentive group. Families were surveyed prior to the intervention using a previously published instrument on family preparedness, and at 30–45 days post-intervention. A Preparedness Score was assigned to each family based on the number of items completed on the preparedness instrument. Significant differences were found between pre- and posttest scores for families that received the intervention, regardless of whether or not an incentive item was provided. Posttest scores were significantly higher than pretest scores, suggesting that the intervention was successful in increasing short-term overall levels of family preparedness in this population.     

Public Health Insurance and Health Care Utilization for Children in Immigrant Families

Objectives To estimate the impacts of public health insurance coverage on health care utilization and unmet health care needs for children in immigrant families. Methods We use survey data from National Health Interview Survey (NHIS) (2001–2005) linked to data from Medical Expenditures Panel Survey (MEPS) (2003–2007) for children with siblings in families headed by at least one immigrant parent. We use logit models with family fixed effects. Results Compared to their siblings with public insurance, uninsured children in immigrant families have higher odds of having no usual source of care, having no health care visits in a 2 year period, having high Emergency Department reliance, and having unmet health care needs. We find no statistically significant difference in the odds of having annual well-child visits. Conclusions for practice Previous research may have underestimated the impact of public health insurance for children in immigrant families. Children in immigrant families would likely benefit considerably from expansions of public health insurance eligibility to cover all children, including children without citizenship. Immigrant families that include both insured and uninsured children may benefit from additional referral and outreach efforts from health care providers to ensure that uninsured children have the same access to health care as their publicly-insured siblings.     

Financial Burden for Families of Children with Special Health Care Needs

Objectives: We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. Methods: We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Results: Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child’s condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Conclusions: Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.     

Sexuality and Disability: A SIECUS Annotated Bibliography

Bibliography

Sexuality and Disability: A SIECUS Annotated Bibliography     

Home Care for Ventilator-Assisted Children: Implications for the Children, Their Families, and Health Policy

This article presents findings from a national study of home care programs for ventilatorassisted children conducted between 1984 and 1987 by the Center for Health Administration Studies at The University of Chicago These findings point to the issues that need to be addressed in the development of policies surrounding both the delivery and the financing of services for these children and their families (a) ventilator-assisted children are a widely varying group with diverse needs, (b) most families report that though they are glad to bring their child home, many difficult adjustments are required to do so, (c) full-time nursing care offers support to families but also intrudes on their privacy, (d) both families and children need social and psychological support once the child is home, (e) the needs of the child and the family may change over time, and (f) the financial burden of having a child on a ventilator at home can be a big stress on the family.     

Accelerating Public Health Situational Awareness through Health Information Exchanges: An Annotated Bibliography

In 2008, the Centers for Disease Control and Prevention awarded contracts to health information exchanges in Indiana, New York and Washington/Idaho to accelerate public health situational awareness. Awardees in each state have disseminated their findings and lessons at professional conferences and in peer-reviewed journals. The dissemination formats ranged from papers, oral presentations, posters, panels and demonstrations at interoperability showcases. With a focus on health information exchange and public health, topics included biosurveillance, electronic laboratory reporting, broadcast messaging, and notifiable disease surveillance. Each presentation is summarized in this bibliography, and the authors affiliated with each site are highlighted.