In their own words: improving the care experience of families with children with special health care needs
- Collection:
- Health Policy and Services Research
- Series Title(s):
- Report (Lucile Packard Foundation for Children's Health)
- Author(s):
- Hughes, Dana, author
- Contributor(s):
- Lucile Packard Foundation for Children's Health, issuing body. Philip R. Lee Institute for Health Policy Studies issuing body.
- Publication:
- Palo Alto, CA : Lucile Packard Foundation for Children's Health, May 2015
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Child Health Services Chronic Disease Delivery of Health Care -- organization & administration Family Health Services Needs and Demand Patient Participation -- methods Communication Barriers Continental Population Groups Language Parents Quality Improvement Socioeconomic Factors Humans United States
- Genre(s):
- Technical Report
- Abstract:
- The number of reports and published articles detailing the challenges facing children with special health care needs (CSHCN) and their families is incalculable. There is little question, however, that a very large number of talented, committed and caring professionals have worked for many years to document problems families face obtaining needed care and to craft program and policy approaches to address them. While the field and this work are dominated by individuals and groups who consider these questions principally through the lenses of their professional perspectives, importantly, families themselves are also involved. Inclusion of families in defining the issues and identifying solutions is critical for a number of reasons. Bias is inevitable in research, policy and program development, evaluation and direct services. Families, of course, often bring biases based on their own life experiences, culture and even professional training. However, in general, parents represent only one interest--the health and well-being of their child and family. With the early implementation of the Affordable Care Act and mounting energy in California and other states to address systemic issues facing CSHCN, opportunities to develop and test new models have emerged. As a means to inform these new efforts, 10 focus groups of parents of children with special needs were conducted. During the spring and early summer of 2013 in the San Francisco Bay Area, 52 parent participants talked about their lives with children with special needs and their experiences obtaining needed services. Participants offered their recommendations for improving the current system of care. These focus groups were diverse in language, race and ethnicity, children's age and children's conditions. Participants were recruited with assistance from Family Resource Centers in San Francisco and Oakland and through sample snowballing. Each group was asked the following three questions: (1) What are your children's special needs and how do these affect their health, well-being, functioning and development? How do they affect the rest of the family? (2) How well are your children's needs being met? What about the system of care is working well for children and families? What is not working well? (3) What specific recommendations do you have about how the system of care can better meet your children's needs? With the assistance of quantitative data software, common themes were identified from the transcript, and additional manual analyses further refined the themes. The resulting pictures are not intended to represent the full scope of issues that families with CSHCN face, but they do describe the most common issues parents raised. Parents placed very strong emphasis on achieving real and effective consumer engagement, by which they meant meaningful, continual family engagement in decision-making around policy, system design and service delivery quality improvement. This report provides a summary of findings synthesized into four core themes. This is preceded by a brief description of the "foundational circumstances" of the families in the study.
- Copyright:
- Reproduced with permission of the copyright holder. Further use of the material is subject to CC BY license. (More information)
- Extent:
- 1 online resource (1 PDF file (23 pages))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 101666247 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/101666247