Search Results: MCHLine

Annotation: This final report provides information about the Together Learning to Cope (TLC) program, which provides support services to children and adolescents ages 3-18 in the mid-Michigan area in families faces with the life-threatening illness of a family member. Contents include a description of the purpose of the project, goals and objectives, methodology, evaluation, results and outcomes, publications and products, dissemination and utilization of results, future plans and follow-up. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org

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Keywords: Adolescents, Catastrophic illness, Children, Community programs, Coping, Families, Final reports, Mental health, Michigan, Terminal illness

Annotation: This book examines what is known about the needs of children who are dying, as well as the needs of their families; the extent to which these needs are being met; and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving the child and parents in treatment decisions, strengthening the organization and delivery of services, hospice care, reducing financial barriers to care, developing support programs for bereaved families, training health professionals, ethical and legal issues; and expanding the knowledge base to guide clinicians and families. Nine appendices provide information on study origins and activities, prognostication scores, assess health-related quality of life in end-of-life care, bereavement experiences, end-of-life care in emergency medical services, education in pediatric palliative care, a description of a New York state demonstration project, and committee biographical statements. The book also includes a summary, a list of reviewers, a reference list, and an index.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu Available in libraries. Document Number: ISBN 0-309-08437-7.

Keywords: Bereavement, Child death, Ethics, Families, Family support, Fetal death, Financial barriers, Health care delivery, Hospice services, Infant death, Palliative treatment, Parent professional relations, Professional training, Terminal care, Terminal illness

Annotation: This report presents recommendations of the National Task Force on End-of-Life Care in Managed Care. The first chapter discusses current problems with end-of-life care, the reasons for focussing on managed care, and setting goals for better end-of-life care. The second chapter lists task force recommendations for improving access, strengthening accountability, and developing and evaluating payment methods. The third chapter explains what policy makers, managed care leaders, and purchasers of managed health care can do to develop better end-of-life care.

Contact: Education Development Center, 43 Foundry Avenue, Waltham, MA 02453-8313, Telephone: (617) 969-7100 Fax: (617) 969-5979 E-mail: [email protected] Web Site: http://www.edc.org Available at no charge.

Keywords: Accountability, Death, Health care costs, Health insurance, Hospices, Managed care, Palliative treatment, Reports, Terminal care, Terminal illness

Annotation: This work is a series of scripts for a puppet shows that tell the story of a terminally ill child. It illustrates the role of the child's home hospice program and shows how a child, his family, and his friends can learn to deal positively with terminal illness. References are included. [Funded by the Maternal and Child Health Bureau]

Contact: Kids on the Block, 9385-C Gerwig Lane, Columbia, MD 21046-583, Telephone: (410) 290-9095 Secondary Telephone: (800) 368-5437 Fax: (410) 290-9358 E-mail: [email protected] Web Site: http://www.kotb.com Available from the website.

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Keywords: Bereavement, Children, Emotions, Family support, Grief, Hospice care, Patient education materials, Pediatric nursing, Terminal care, Terminal illness

Annotation: This book discusses the partnership between parents and professionals in caring for children with life-threatening conditions. It describes initiatives taken in England to redress deficiencies in providing care to terminally ill children and their families so as to provide a comprehensive, flexible, and compassionate national network of care. It covers domiciliary and respite hospice care, specialist organ/system failure and parent self-help groups (congenital heart disease, infant deaths, children with AIDS, cystic fibrosis, and mucopolysaccharide disease), education of children and of professionals, and bereavement.

Contact: Oxford University Press, 198 Madison Avenue, New York, NY 10016, Telephone: (800) 451-7556 Secondary Telephone: (212)726-6000 E-mail: [email protected] Web Site: http://www.oup.com/us Available in libraries.

Keywords: Bereavement, Child health, Children, Hospices, Terminal illness

Annotation: This book presents papers from a symposium about care of children who are dying or who have serious handicaps, focusing on coping with death and dying in childhood and problems concerned with coping with congenital or acquired handicap in childhood.

Keywords: Bereavement, Children with special health care needs, Coping, Genetic diseases, Interdisciplinary approach, Terminal illness